kidz

Traveling Bears

2012-01-30T00:01:00.001-07:00

Do you know a child who would love a visit from a cute and cuddly teddybear who just so happens to have the same disability as they do? These friendly bears are on a very special journey spreading awareness, encouragement and love by visiting families all over the world. This mission was brought to life by a very young 7 year old boy named Elijah and his mom. They wanted to raise awareness for his diagnosis Pediatric Stroke, and thus the Traveling Awareness Bears were born.

The effort took off and was even more successful than they could have ever imagined, bringing along the conception of multiple bears with varying diagnosis’s known as the Bearowicz family. The bears are allowed to visit the home of a very special little girl or boy for 1 week, and for individual circumstances up to 2 weeks.They arrive with a journal and a passport in tow. Each child gets to stamp the passport and marvel at how far and wide their bear has traveled to be with them. (pretty awesome huh)?The bears hate that they have to leave after just 1 week but they are mindful that their job is very important and they have friends around the world that need them too.The bear is allowed to go almost everywhere, to schools, Dr.s appointments, surgeries and even while they are attending horseback therapy lessons. The organization is to taking suggestions on other disorders, diseases,syndromes, and disabilities but for now the bears that are making the rounds are...Pediatric Stroke, Autism, Congenital Heart Defect and Rare Chromosome Disorders, lymphatic malformation, Chiari malformation, cerebral cavernous malformation, EA/TEF and they are also working on diabetes, epilepsy, leukemia, hearing impairment, ADHD/ADD.. Their goal is to eventually have bears for all of the things that affect our children. If you would like a member of the Bearowicz family to come visit your home for a week Click Here .The organization is currently in the process of becoming a non-profit 501c3 but in the meantime has a WISH LIST Please take a moment to see if you can help out with any of the items on their wishlist. They are not expensive items and some of you may have things around the house that would be helpful to them.Traveling Awareness BearsP.O. Box 1513O’fallon, MO 63366

Handle

2012-01-29T00:01:00.000-07:00

The Letters He Would Write

2012-01-26T00:01:00.002-07:00

I just had to share this sweet birthday gift to Caleb from his grandmother, Janene Baadsgaard.

Happy Birthday Caleb!
Instead of writing a story for your birthday this year I thought you might want me to help you write a few letters to your mother, father and brothers Joshua, Mathew and Mitchell.
I think if you were able to write a letter to these very special people who love you so much and take such good care of you they might read like this . . .

Dear Mother,

Many years ago you went in for an ultrasound very early in your pregnancy. You found out that I was a boy . . . and you also found out that I was missing my brain. When the medical professionals told you that I had no chance of survival and recommended an abortion - thank you for having the courage to listen to your heart and not your fears. When they told you I would have no quality of life and that I would ruin your family’s quality of life, thank you for choosing to discover what quality of life really means. When they told you I was missing an eye, thank you for choosing to see me as your precious son and not what the doctor called me (not viable - not conpatible with life). When further tests revealed that my entire head had not formed correctly and that my cleft-plate, partially formed nose and multiple missing cranial structures would make eating and breathing in a usual way impossible, thank you for choosing not to despair, but to devote yourself cheerfully and gratefully to my 24-hour care. When the doctors told you to take me home, buy a burial plot and let me die, thank you for choosing to fight for my life and celebrate each day I was in your home.

These past seven years have brought multiple hospitalizations and near death emergencies. We’ve spent a lot of time in hospital, you and me. Thank you for always being there right beside me when each individual breath was painful, labored and exhausting. I’ve heard your every prayer, every heart-felt longing and each exhausted plea to God. And though I’ve never been able to speak a word or raise my arms to embrace you, never doubt how much I love you my precious mother. There is a love deeper than life and broader than time between you and me, an eternal bond that time and circumstance will never break.

I am so grateful that you have chosen to live the past seven years with joy, not sorrow – that my presence was and is enough for you. The world defines us by what we can do. Thank you for choosing to define me by who I am. There will be a day, beyond this life, when I will be able to say all the things I never said, but I have a feeling you already know. When two hearts are knit together, there is often no need for words.

I was born in the winter, a time of waiting before the spring. Always remember that winter’s promise is the hope of spring. There will be a day when the time of waiting is over and all that was lost will be reborn.

I love you mom.

Caleb

Dear Father,

I know you and mom stay up late every night with me so my medication can take effect and also to have some special snuggle time with me. You and Mom usually tuck me into bed around midnight, but it usually isn't long until my alarms start beeping, I need suctioning, a diaper change or more medicine. A few nights a week I have a night nurse who sits with me from 12-6 so you and mom can get some sleep. But on the other nights, it is you and me Dad. You are always there with me when I need you in the night. Those late night hours when it is just you and me mean everything to me. In this life I will never be able play catch, or even speak or hug you. But I know that when fathers love their sons, they love them in the way they need to be loved. With us it is g-tubes, respirators and diapers.

You are always there with me when I need you in the day also. Dad, thank you for going to work every day at BYU so that all of us have everything we need.

Dad, I want you to know about something you may not see. When fathers love their sons like you love me, the powers of heaven open. There are angels around you every night, lifting your arms when you are too tired and keeping you awake when every cell in your body screams for sleep. I am aware of and grateful for every time you turn me, change my diaper, suction me then hug me and kiss me. You never complain, and though I can’t respond when you talk to me, I hear you Dad. I hear every word, spoken or unspoken, every desire, and every prayer to God in my behalf.

I also love the way you tease me like Dad’s do. Like the way you call me One-eye and let me dress up as the one-eyed pirate on Halloween.

I love the way take me everywhere and proudly tell people I am your son. When you come into my room at night I always proudly tell the angels that you are my father.

I love you Dad.

Caleb

Dear Brothers,

Josh, Matty and Mitch - I’m so happy that you are my brothers. You always take time every day to include me and make me an important part of the Moody boy’s story.

I remember when you used to crawl in in crib when I was a baby and sing “I am a child of God” when my heart rate was getting too slow. You always brought me toys and even though I couldn’t play with them the way you do, I imagined myself playing with them and it was still fun.

I love it when you hug and kiss me and tell me about your day. Even though I can’t raise my arms to hug you back, I love the way you lift my arms around your neck and put your cheek next to my lips.

When you talk to me I can’t answer you with my mouth in words, but I hear you listening to me with your heart. When you’re listening that way you can hear me telling you, “I love you Josh.” “I love you Matty.” “I love you Mitchell.” Thank you for helping mom during the day when I need to be turned or suctioned. That is such a nice way to tell me you love me back.

Don’t worry about my eye that is missing. When I was in heaven, I knew the Baadsgaard secret code for telling each other “I love you, you’re wonderful, and you can do it!” It was a wink. I knew that I would never be able to speak to you with words in this life, so I thought of a plan. That is why I chose to come as your brother winking so that you would always know that I love you and believe in you. Thank you for believing in me – believing that I am still your brother inside this body – even though I can’t move, or see or hear or think the way you do. Thank you for believing that even though I’m missing my brain, I’m not missing my heart and soul. Thank you for believing that we will always be one of the Moody boys and we’ll always love each other forever.

I love you Joshua.

I love you Mathew.

I love you Mitchell.

Caleb

Brothers

2012-01-25T00:01:00.000-07:00

I saw this on EFTV's blog and just had to pass it along!

http://www.blogger.com/img/blank.gif

Fishbowl Cards

2012-01-24T00:01:00.000-07:00

I wanted to share a resource I recently found, Fishbowl Cards. They sell special needs-related cards and posters, they have some really, really cute things! Here are just a few....

The Most Beautiful Things

2012-01-23T00:01:00.001-07:00

I was so grateful Jocalyn shared this trailer and film on her blog. It truly inspired me for many reasons, so I thought I'd share it! Here is the trailer and the actual, full film. Truly amazing.

Control

2012-01-22T00:01:00.002-07:00

The cut is deep, but never deep enough for me
It doesn't hurt enough to make me forget
One moment of relief is never long enough
To keep the voices in my head
From stealing my peace

Oh, control
It's time, time to let you go

Perfection has a price
But I cannot afford to live that life
It always ends the same; a fight I never win
[ Lyrics from: http://www.lyricsmode.com/lyrics/j/jj_heller/control.html ]
Oh, control
It's time, time to let you go

I'm letting go of the illusion
I'm letting go of the confusion
I can't carry it another step
I close my eyes and take a breath
I'm letting go, letting go

There were scars before my scars
Love written on the hands that hung the stars
Hope living in the blood that was spilled for me

Oh, control
It's time, time to let you go...
Control
It's time, time to let you go

One Day You Will

2012-01-21T00:01:00.000-07:00

I just want to shout these lyrics from the rooftop for every special needs parent facing a new diagnosis to hear.

Embrace Diversity!

2012-01-20T14:34:00.000-07:00

Fine Motor Fun

2012-01-20T00:01:00.000-07:00

Our kiddos are always doing therapy, but it's nice to make it fun for them when we can. Here are a few fine motor-building activities to try! Images linked to sources.

Velcro Bottle - Detergent bottle, velcro, toys....
take toys off the velcro and put them in the empty bottle.

Use oven racks or cooling racks and large ribbon to practice weaving

Jumbo popsicle sticks, magnet strips, and paper clips... sorting, counting, fine motor.

DIY Geoboard

Practice shapes, colors and buttoning with a button board

Pipe cleaners & a strainer to practice accuracy

Popsicle sticks and velcro to practice making shapes

Milestone Moxie

2012-01-19T00:01:00.001-07:00

Guest post by Cassie of Beyond Measure.

I follow a lot of blogs... I love reading about all of these other kids.... I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.

And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.

I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.
That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.

I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.

He required so much support. I just wanted him to be able to hold his head up.
That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.

His PT had to make him a special seat to go in his high chair so that he would have more support when eating.

It felt like we were constantly having to do things, adapt things, to help Caleb.

Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.

And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.

For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.

I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.

I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk. I have even seen him run.

I've seen him get stronger and stronger. I have seen him use legs that he can't feel.

And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go. Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Strength

2012-01-18T12:01:00.002-07:00

Thank you to HopeLights for this and many other inspiring, encouraging messages.

Wheelchair Acceptance

2012-01-18T00:01:00.000-07:00

Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair. There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me. Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.

There are just so many unanswered questions: I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different. I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!

A Wise Man's Remedy

2012-01-17T00:01:00.001-07:00

I've mentioned it before, but my family has recently started using and become believers in essential oils. The one I believe most firmly in, though, is Frankincense. (The most expensive one, of course!) I recently discussed this with a neurologist and he said that they are currently conducting many scientific studies to prove the many positive effects of Frankincense, but that he is already a believer in it. He eagerly encouraged me to continue using it for Chloe.

I can say without hesitation that Frankincense has helped, heck practically eliminated, her sleeping issues. Maybe that's because it has helped with joint pain or anxiety, I don't know exactly what it does to help, but I know it helps.

They have recently linked medicinal benefits of frankincense to therapeutic benefits for bladder cancer. You can read an article about it here.

I think those wise men were really on to something....

Honoring the Spirit of Advocacy

2012-01-16T00:01:00.002-07:00

In honor of one of the greatest examples of advocacy, I'd like to wish you all a Happy Martin Luther King, Jr. Day. He taught us not to stand still when we see injustices, but to always be brave, step forward, advocate, and strive to ensure the world treats everyone justly. As I have come to know many of you, I see this spirit alive and thriving! So today, I honor you as well.

Greatest Growth

2012-01-15T11:12:00.004-07:00

I am in the hospital right now for personal health issues and some adorable little ladies just came around with cards that had these amazing quotes on them. They were barely out of the room before I got on the computer to share them with you all. I thought instantly of my fellow "momz"... the many differing challenges you all face. You are always in my thoughts and prayers, that you will be able to bear your burdens and have divine assistance when needed. Enjoy these quotes.

"Whenever we are inclined to feel burdened down with the blows of life, let us remember that others have passed the same way, have endured and then have overcome. When we have done all that we are able, we can rely on God's promised help.

"You have access to the lighthouse of the Lord. There is no fog so dense, no night so dark, no mariner so lost, no gale so strong as to render useless the lighthouse of the Lord. It beckons through the storms of life. It seems to call, 'This way to safety; this way to home." ~Thomas S. Monson

"I have seen the remorse and despair in the lives of men who, in the hour of trial, have cursed God and died spiritually. And I have seen people rise to great heights from what seemed to be unbearable burdens.

"Finally, I have sought the Lord in my own extremities and learned for myself that my soul has made its greatest growth as I have been driven to my knees by adversity and affliction." ~Marion G. Romney

What Makes Someone Extraordinary?

2012-01-15T00:01:00.001-07:00

I'm sure you've seen videos about Nick Vujicic before, but this one is new (to me, anyway) and as inspiring as ever. I love the parts when he talks about his parents.

Salt Lake City Rain

2012-01-14T12:01:00.001-07:00

I wanted to share this song for anyone who has suffered the loss of a child, or faces the reality of terminal illness. This song was written about a special little boy named Gavin. You can find more about his story here.

&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://ryantanner.bandcamp.com/track/salt-lake-city-rain"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;Salt Lake City Rain by Ryan Tanner&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;

Song & Lyrics by Ryan Tanner

Love of my heart, why must we part?
I said a prayer on a heavenly start
Give me this day shoulders of strength
To carry the burden of time taken away

I woke last night to a voice in the hall
I heard you calling my name
I rushed to meet you, found nothing at all
All I could hear was the Salt Lake City rain

Love of my heart, where do I start
To patch up the pieces of the old-fashioned heart?
When will it turn, what lessons could we learn?
I'll be counting the days 'til the sun will return

I woke last night to a voice in the hall
Thought I heard you calling my name
I rushed to meet you, found nothing at all
All that I heard was the Salt Lake City rain

The Gift of a Mother's Love

2012-01-14T00:01:00.002-07:00

I don't know which is greater -- the gift of having a mother or the gift of being a mother....

A Mother's Love - Mark Masri lyrics

Thank you for watching over me
All of the sleepless nights you lay awake
Thank you for knowing when to hold me close and when to let me go
Thank you for every stepping stone
And for the path that always leads me home
I thank you for the time you took
To see the heart inside of me

You gave me the roots to start this life
And then you gave me wings to fly
And I learned to dream
Because you believed in me

There’s no power like it on this earth
No treasure equal to its worth
The gift of a mother’s love

Thank you for every sunlit day
That fill the corners of my memory
Thank you for every selfless unsung deed
I know you did for me
Thank you for giving me the choice
To search my soul till I could find my voice
And I thank you for teaching me
To be strong enough to bend

You gave me the roots to start this life
And then you gave me wings to fly
And I learned to dream
Because you believed in me
There’s no power like it on this earth
No treasure equal to its worth
The gift of a mothers love
I thank God for a mother’s love

Footsteps With Jacksen

2012-01-12T00:01:00.000-07:00

I'd never seen the place
Where true beauty lies
Until I found it twinkling
In those magical blue eyes.

The way they laughed and sparkled
Like they were dancing to a song,
Those precious eyes held secrets
I'd learn you stored before too long.
As you grew I began to notice
You would shield those big blue eyes,
You wouldn't share your sparkles,
Just the tears formed from your cries.
You did not care for company
Or friends to call your own
Instead you spent your playtime
Lining cars up all alone.
While other kids made milestones
I waited for the day
Your words would flow together
And you would have something to say.
Something deep inside me
And something in those eyes
Told me there was an answer
To his heart wrenching cries.
The day I learnt that AUTISM
Was to become etched into my heart
Was the beginning of a life
Filled with magic from the start.
The days I feel disheartened
Alone and filled with fear
He finds a way to show me
Why I'm meant to be right here.
I am meant to be his mother
He is meant to be my son
We are meant to face together,
This journey just begun.

By Fiona Goldsworthy

Made With LOVE

2012-01-11T00:01:00.000-07:00

MADE WITH LOVE By Bridgette D. Tuckfield (’11)

A BYU grad student has watched special-ed students rise to her high expectations.

Grad student Patricia D. Lund (BS ’09) carefully pulled back the cover of her treasured Bernina sewing machine, a gift from her grandfather, her audience of seven high-school students standing by. A former junior high teacher, Lund didn’t know how it would go.
Like all good teachers, she wanted her students to succeed; however, Lund was now working with moderately to profoundly disabled students at the Dan Peterson School in American Fork, Utah. The assignment to help students transition from school to adult life was her dream job, but she felt frustrated by the limited curriculum of vocational skills offered.
Typical assignments included paper shredding and counter wiping, says Lund. “I had the feeling my students were beyond what we were doing. I just needed to discover each student’s individual talent.”

So Lund decided to try teaching sewing. To her delight, the students reacted enthusiastically. Initially, Lund kept it simple: threading the machine and straight stitching. This year, she is teaching her students to make skirts.

“Robin is my little seamstress,” Lund says of a student who picked up the basics in just two days. “She has a definite eye for colors that will go together. . . . There have been times when I have been trying to model how I want her to sew a project and she will stop, pick out better colors, and then let me continue. . . . She’s just like a fashion designer.”
Inspired by her students’ success, Lund started Life Occupation Vocation Education, or LOVE. The program helps students learn skills tailored to their interests and make choices about their future.

The students’ repertoires now include all sorts of crafts. There are Bekah’s Pocket Pals—colorful, microwavable hand warmers. Another student, Chloe, creates counting books for children. They also make handbags, hair accessories, baby items, candy cellophane cones, and molded chocolates. They first sold items to teachers within the school, playing commercials in the hallway. Now LOVE products are available online. All proceeds go to purchasing supplies and to the students.

“I see such potential in these kids,” Lund says. “I have nonverbal children who are making things independently and are happy and making their own choices. It’s been incredible. Aggressive behaviors have declined sharply. . . . Even the way the parents look at their students has changed. I’ve had people see their children work and say, ‘Whoa, I never knew she could do that!’”

While working at Dan Peterson, Lund wanted to further hone her teaching skills and successfully applied for BYU’s graduate program in special education. Her graduate work is helping her delve deeper, particularly a course on transition. “The class really got me soaring and thinking of ways to improve lives for older students with disabilities,” says Lund. She puts what she learns at BYU immediately into practice at work and hopes to do research with her students. Her goal is to start a mentoring program allowing them to explore interests such as dancing and pottery.

“If we don’t give our students opportunities,” Lund says, “we’re not going to see what they can really do. They really rise to the occasion. When you have high expectations of people, they will meet them. . . . Treating students like they are exceptional helps them to become exceptional.”

Web: 3tslove.webs.com

Books In Waiting

2012-01-10T00:01:00.000-07:00

Ideally, I would write a book review about these books. However, I purchased them, excitedly touched the covers, anxious to read the words, then sat them on my nightstand. There they still sit. Yes, I have a kindle, but there's something about the real deal that I just don't think I'll ever get over. All of these books have either been highly recommended to me or just reached out and called my name on Amazon.com. Thought I'd share....

This one I'm still waiting for its release, but I'm an avid follower of her blog.... :)

Do you have any book recommendations? Please leave a comment!

Hailey with Impact Dance Company

2012-01-09T00:01:00.001-07:00

A while back I wrote a post called "A Dance for Hailey" Hailey's mom Natalie has a best friend who has a dance company called Impact Dance Company, it is a fairly new company but the dream to do this choreography has been in the making for almost 5 years now. Ever since Hailey was born with Cerebral Palsy, Meghan McCaffrey dreamed about doing a dance piece that would help others to understand and raise awareness for Cerebral Palsy and to celebrate Hailey and all that she has to offer. Well, today we had the opportunity to meet the dancers and the dancers had the opportunity to meet their inspiration (Hailey) The had the opportunity to observe Hailey's movements, and the way that she crawls,smiles,sits acts, and laughs. The next two videos are just so exciting to me, as I watch Hailey act out and perform with the dancers without any prompts from us, she was totally comfortable with what she was doing and even commanded the stage.

One of Hailey's dancers summed up our morning by saying " We danced, we talked, we laughed, we learned and we cried" All of these emotions were present and I can't figure out who learned more. Us, The Dancers or Hailey. But I do know that it was one of the most positive experiences for everyone involved, and we can't wait to do it again.

I don't quite know all the details at this point, but Meghan tells me she plans on doing this piece in a theatre, it will start out with some information about C.P., Possibly a video chronicalling Hailey's journey this far, and the finale will be a Rockin performance by her dance company that will captures the true spirit of Hailey. This is going to be a lot of hard work over the next few months, but I know it will be worth the wait! Thank you Meghan...head on over to Impact Dance Company become a fan and you can track the progress of this lovely and heartfelt performance for Hailey.

It's All Good

2012-01-08T00:01:00.000-07:00

And we know that all things work together for good to them that love God, to them who are the called according to His purpose.

Hard Life

2012-01-07T00:01:00.003-07:00

Stop starin' at me
Leave the sad looks at home
Everybody feels bad,
And you don't understand,
It's not like I'm alone

'Cause everyone has battles to fight
And I don't need your sympathy tonight

Yeah, it's a hard life
But I'm okay
If I didn't have this, I wouldn't be who I am today
And I have lots of friends
Oh, and I have love
And yeah, I have a hard life but in some ways everybody does

There's a lot I can't do
But don't be judgin me
I'm in a body I hate
But I have my faith, more then what you see

So what if I can't kick a soccer ball into a goal?
I feel like I can lift 500 pounds with my soul

Yeah, it's a hard life
Oh, but I'm okay
If I didn't have this, I wouldn't be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does

And some like me have lost their battle
But they will be the sun that gives you warmth,
And lights the way so we can shine on

Yeah, it's a hard life
But I'm okay
If I didn't have this, I wouldn't be who I am today
And I have lots of friends
Oh, and I have love
Yeah, I have a hard life but in some ways everybody does
Yeah, I have a hard life but in some ways everybody does

Adaptive Sports Academy Class

2012-01-04T15:46:00.003-07:00

As a mom of a child with special needs, there have been times where I've been frustrated by "limitations".

Oh, you know... the basics. Little things like speech limitations, social skills, or ability to control behavior, etc, etc. But I get it. It's all part of the package and thus, our life. We work around it. We immerse ourselves in therapy, doctor appoints, and medication. With time and LOTS of work and repetition things can and do get better. Progress is made.

But.... there is one area that has been a continual challenge for us on this journey. Because of Jackson's disability, finding interests for him outside of our home has been a challenge. While typical kids can choose from dance, music, the arts, and sports, Jackson has not had the desire or ability to really connect with any particular interest or hobby. Part of that is because he has a hard time connecting with people in general. However, he does enjoy Scouts. Yay, for Cub Scouts!

I think if we lived closer to SLC, there would be more opportunities for him to participate in adaptive sports and activities. Plus, let's face it. When you have a child with special needs AND other children with their own set of needs, the money you normally dedicate to that child's "typical activities" is instead dedicated to their therapy, medication, and medical bills. Plus, when you are going to OT, PT, Speech, and Psych - who has time for one more thing, right? :)

We also tried to get Jackson to "play down" on community leagues with his younger brother. For a few years, this seemed to work well. Although, now we're at a point where the younger age group's skill set is advancing and Jackson is finding it more difficult to keep up. Plus, the desire is not there. In baseball, he enjoys hitting, but would rather pick grass when it is his turn to be in the outfield.

So... what to do, what to do?

This past fall, this topic was on my mind heavily. Jackson has been a therapy kid for 11 years and I have felt the tides beginning to turn. I needed to find something for him that wasn't so clinical. Heaven knows we have our clinical plates FULL! I also wanted to find something for Jackson that would be enjoyable and let him interact with other kids (social therapy) in a more typical environment.

Do you every have those moments where you know you were lead to a certain point? Well, on a certain day in October, I had that a-ha moment. I knew I was where I needed to be. After dropping Lex off at dance, I decided to venture west to a tumbling facility in K-town. But... they were closed. Every time I've stopped there - they've been closed. Grrr...!

I then remembered the Sportsplex. I remembered Collin had participated in their Sports Academy programs in the summer. It was worth a try. So I stopped in and began asking questions at the front desk and described what I was looking for.

One thing led to another and I ended up talking to the Gym Manager, Joel. He was great and very receptive to my questions. While the gym didn't currently offer anything I was describing (other than individual personal training and a kid's class), he said he was happy to help me put something together.

At first I thought I would like to take on another project / opportunity. (There really aren't a lot of adaptive activity options in Davis County.) But, I also knew my plate was full. So... we decided to go with the existing kids' classes and hope for the best.

Not more than two weeks later, we were at ward party and our new neighbors sat down beside us. Camille Bennett is darling and just happens to be finishing her masters in.... wait for it.... Special Education Physical Education. She is currently working in programs like the one I want set up at the Sportsplex.

So, I said... "Camille! I have a business idea for you! You would be perfect for this. There is such a need for these types of programs in Davis County."

Fast forward two months, and.... it is happening! My neighbor, Camille, and Joel, from the Gym, have worked their magic and have created an Adaptive Sports Academy Class. It is going to be great. Here is all of the information. If you are still with me this far into the post, PLEASE help us pass along the information to anyone who may need a little extra help with coordination, agility, sports, technique, social skills, etc. This isn't necessarily a class for kids with "special needs". After all, what does that mean anyway? For heaven sakes, I have special needs - lots of them. :) It is a class for anyone who may not flourish in the typical environment - for someone who may need to take things a little slower and who needs a bit of extra help. This is the class!

They probably need about 10 participants to really make the class work. If they have more register, additional classes will be added. I truly think this is a perfect opportunity for so many kids who just didn't thrive in traditional sport settings. I am crossing my fingers that it will be a success.

(ps - I'm not be compensated to promote this class, nor am I affiliated with the class in anyway. Well, other than being a passionate mama bear who wants to find programs for her son.) :)

pss: Now go!!! Help me spread the word! Classes begin Thursday, January 26, 2012

Adaptive Sports Academy Information

Class Description:

Adaptive Youth Academy provides children who have unique abilities and needs with the opportunity to learn and practice athletic skills, improve fitness levels and to improve self-confidence. Not to mention, having the opportunity to be part of a team. If they enjoy playing sports and want to be a part of a team this is a great opportunity and your kids will LOVE it. This class will be taught by Camille Bennett.

This class will be offered on Thursday from 4-5pm. If there is enough interest a second class will be from 5-6pm on Thursdays. Classes will begin on Thursday, January 26, 2012.

Adaptive Youth Academy is just $30 per month for SportsPlex members or $40 per month for nonmembers. The classes are grouped into four sessions that each include eight weeks of instruction. For example, Session III runs from Jan. 26 to March 15 — classes are not held during weeks surrounding major holidays. There is a one-time enrollment fee of $20.* If you already paid the enrollment fee when you registered for Session I, you don’t need to pay any enrollment fee to register for Session III. You can pay the enrollment fee online to secure your child’s spot in the program.

Visit the SportsPlex website at http://sportsplexgyms.com/youth-academy-center/sportsplex-youth-academy-classes for more questions.

Some quick facts about the new Adaptive Youth Academy class:

· Adaptive Youth Academy provides children who have unique abilities and needs with the opportunity to learn and practice athletic skills, improve fitness levels, and to improve self-confidence.
· This is a great opportunity for to be part of a team and practice sport skills.
· This program provides a smaller group, more practice time, and adaptations needed to help each athlete learn skills at their own pace.

Bio about the teacher:

Camille (Lott) Bennett is currently a Master’s student at the University of Utah in Special Physical Education. Camille grew up in Kaysville and attended Davis High School. While growing up she played many different sports. Her main focus in athletics was Track and Field. She was recruited to be a sprinter and hurdler at Weber State University. She received many All-Conference Awards and was a three-time Big Sky Conference Champion in the Women’s Mile Relay. Camille got her Bachelor’s Degree in Physical Education, Health Promotion, and Coaching Sport. She has spent over 500 hours planning, teaching, and coaching students with disabilities in Davis and Weber School Districts. Camille is married to Justin Bennett and is currently living in Layton.

~~~

If you know of any similar classes in your area, please leave a comment!

Different

2011-12-26T00:01:00.000-07:00

I’m not your average type of girl
Not part of this stereotypical world
Don’t wanna be anything but myself
I was never good at tryin’ to be someone else

Take me as I am I’m not changing for anyone
Guess it’s me against the world but tell me one thing

Why do they hate me for being different? Different.
And when will they see that being different is good? Different

High school life is so black and white
You either fit in or stick out, but that’s just life
For me I’m sure that some day they will find
That fitting in was overrated

Why do they hate me for being different? Different.
And when will they see that being different is good? Different.

Although It's Been Said Many Times, Many Ways....

2011-12-25T00:01:00.000-07:00

Light

2011-12-24T10:47:00.004-07:00

Caleb's eye really responds to light so we have a light box we use to help him with vision.

It touched my heart to see Mitchell pull it out so he could teach Caleb.

It melts me to see Mitchell so eager to share the light with Caleb

While at the same time Caleb teaches him what true light really is.

I hope my boys will never forget the light and love they feel when they spend time with Caleb.

For the way he shares his light is divine indeed.

One of the Best Gifts: Time

2011-12-22T00:01:00.000-07:00

This is a TV interview with April's mom, Janene Baadsgaard, where she shares 4 daily rituals that help her make time for the ones she loves.

Create Memorable Mealtimes
Families who commit to eating at least one meal together soon discover the benefits that come from creating a golden family hour each day. This hour is time set aside exclusively for the family. It helps to set aside a specific time every day and eliminate as many distractions as possible by turning off the television, computer and telephones. Community, school, career and church activities are numerous and will encroach on family time if not carefully selected.

A golden hour might include:
Preparing a meal together
Saying a prayer
Eating together
Reading a chapter from a good book/talking about the day's activities/singing a song
Doing the dishes together
Helping with homework/going for a walk/throwing a baseball/playing a board game.

Make Homecomings and Departures a "Touching" Event
Everyone likes to be noticed, appreciated and loved. It only takes a few seconds for parents to make every homecoming and departure a little more warm and fuzzy for their children. Don't hold back. Be warm and affectionate when your child leaves or come back home.

Parents can:
Kiss
Hug

Make a positive comment - "I believe in you!" "Make it a good day." "I'm so glad you're home!" "I missed you today."
Wave from the window
Blow kisses
Smile
Say "I love you."

Utilize Transport Time
Most parents and children spend part of their day in their car going and coming from a multitude of activities like school, lessons and activities. Parents can put this time to better use by recognizing car time as a great time for positive personal parent/child interaction.

Parents can:Turn off cell phones/radio/stereo
Be truly present
Talk
Listen - Sometimes children open up best when they aren't looking straight at you
Create fun car games and a family goodbye honk
Invite one child at a time to accompany you on routine errands

Establish Pleasurable Bed Time Routines
Bedtime routines can be painful and stressful if rushed or forced. It only takes a few extra minutes to have positive personal time with each child each night.

Parents can:
Stager bedtimes for each child so they have individual time and avoid interruptions
Read books
Tell original adventure tales starring the child
Take a few minutes to carefully tuck the child in bed
Ask: "What was one good thing that happened today?"
"What was one thing that was not so good?"
Sing a lullaby
Pray
Stroke the child's forehead
Say I love you
Rub noses/kiss/hug

Children who have been loved know how to love. Daily loving rituals don't take more time or money; they only require that parents re-order their lives so that they have unhurried time for the people who matter most.

Who We Are

2011-12-14T00:01:00.000-07:00

A sweet perspective from Caleb's grandmother, Janene Baadsgaard, of Baadsgaard Bylines.

I've noticed that when we are meeting someone for the first time we often ask, "What do you do?" It is a common question for most of us are curious about other's occupations.

I've also observed that as my children were growing up many people asked them, "What do you want to do when you grow up?" referring to what career they will choose. Prestige and the ability to earn money are often the result of what we choose to do.

So we grow into adults who focus almost entirely on what we do to feel good about ourselves. If we don't do enough during the day, we feel lazy. If we don't choose the right career or if we do something wrong, we fill our hearts with regret or guilt. More and more we learn to focus the camera lens of our lives on what we do.

The other day I was speaking with someone about my grandson Caleb. When people find out Caleb was born without a brain they often stand in stunned silence. Then they always ask, "What can he do?"

I know the question is innocent and I am not offended but I can't help thinking that they are missing the point. Caleb might not have a brain but he has a heart and soul. If I go through the usual list of important achievements in life, Caleb may not fit the bill. But I always long to explain that it is not what Caleb can do that defines him.

And sometimes the person I'm talking to persists with detailed questions like . . .
"Can he see?"
"Can he move?"
"Can he hear?"
"Can he speak?"
"Can he eat?"
"Can he breathe?"
"Can he think?"

And though the questions are innocent they often leave this impression . . .
"Well if he can't he do anything, I feel so sorry for him and for you. If he can't do anything - what purpose can his life possibly have?"

Because our family has been blessed to have Caleb in our lives we have learned that what makes someone valuable is not what they do but who they are. Though Caleb's body makes is almost impossible for him to do much of anything in a physical sense, his presence is enough for us. His divine and noble spirit is alive and well inside a body with severe physical limitations yet enhanced spiritual abilities. Caleb speaks without language getting in the way. He loves without the inherit limitations of physical affection. His soul shines with a light only seen through the eyes of love.

So the next time you see someone like my grandson Caleb do not ask their family members what they can do. Do not feel sorry for them. Instead say, "Tell me about your child."

And the next time you are thinking dark thoughts about self or others because of something you or they did of failed to do . . . stop.

Then, pray.

Allow yourself to feel the love of God for you and every person who has walked this earth. You are not valuable to God or those around you because of what you do or don't do. You are valuable because you are you.

Your existence - your presence - is enough.

And perhaps when you talk to the youth you might ask, "Who do you want to be when you grow up?" For it is our inner qualities, the qualities Caleb already possesses, like compassion, patience, gentleness, meekness, and love that are the true measures of a meaningful life.

Tribute to Siblings

2011-12-05T00:01:00.001-07:00

This is the family whose story inspired me to start Chloe's Sunshine Playground. They deserve the recognition they got on the Today Show last week. Each of them touch my heart so much, and I think the song to a special needs' child's siblings will resonate to many of you....

Visit msnbc.com for breaking news, world news, and news about the economy

Remember Me

2011-12-04T00:01:00.001-07:00

The Gifts We Keep

2011-12-03T00:01:00.001-07:00

I have just fallen in love with this song and had to share it.

This is my favorite part:

These are the gifts we keep
and this is the morning that we breathe
and then we see
These moments are the only gifts we need

Even though the song is specifically about Christmas morning, it makes me think of all the little magical Christmas moments that we share with our children! Those moments truly are the gifts we keep. I hope you cherish all the moments with your little ones this year!

It Snowed!

2011-12-02T00:01:00.000-07:00

Here are a few ideas to do with your family when it snows, and a catchy song too!
(Images linked).

Indoor Ideas:

Outdoor Ideas:

Now I Can Photographic Documentary Book

2011-12-01T20:00:00.000-07:00

This time of year it seems like everyone around the world opens their hearts and their wallets to help those around them. It's actually quite a beautiful thing. Part of me doesn't care that it's only during this time of year that people seem more charitable. It seems appropriate, really, that if there is only 1 time of year when we all open our hearts to more giving of our time, talents, and physical means...it would be now. It makes me happy. If you happen to be looking for a good cause in which to help or donate to, I have an opportunity for you here.

Many of you know that Samantha attended therapy at Now I Can this past Fall. It was fantastic and we will return in March 2012. While we were there, I met a photographer, Michael Ririe, who became attached to these children. He has devoted his time and talents to spreading the word, through is talent, about Now I Can ~ and our children. Most recently, he has put a book together filled with pictures and written contributions from families. It is beautiful. He's waiting to gather the funds for publication. Maybe it's 'cause my baby girl in it a few times and I actually wrote in the book...I mean, that is kind of cool...but I want this book published. I really do believe this book will make a difference. His previous work to draw attention to Now I Can was a success, but he's turned it up a notch with this book. In creating a book of professional photographs that showcase these children...their beauty, spirit, and drive...as well as what is written about them, we are hoping to bring more awareness and raise funds for the center -- allowing more financial assistance to families like us. We were recipients of a grant that helped cover some of the expense. That extra money made a big difference to us and insured Samantha's return to Now I Can. What if every family in need could send their child to Now I Can with some kind of financial assistance? What is the potential of this small book? It will raise awareness. It will tell the real story to future possible donors. And ALL proceeds generated will go back to Now I Can therapy grant fund. 100%. That money will go towards Sammy. It could go to your child. $1? $5? $12.75? $25. More? We have 348 "registered" followers on Kidz. What if we all donated $5? That's $1,740. Pretty cool. Anyway. Check out the link to Kickstarter -- Now I Can -- A Photographic Documentary Book and watch the video. And decide. If enough people don't support it and the book doesn't happen, your donation won't be charged. You won't "lose" a thing. We have until December 31. But if there are enough of us, and this book does happen, you could be one of the many helping families just like ours.

The video, alone, is worth a look.

Love is Christmas

2011-12-01T00:01:00.000-07:00

Sing to Me Saturday on a Thursday? I'm such a rebel!

I don't care if the house is packed,
Or if the strings of light are broken.
I don't care if the presents are wrapped,
Or if there's nothing here to open.

Love is not a toy, and no paper will conceal it.
Love is simply joy that I'm home.

I don't care if the carpet is stained; we have food upon the table.
I don't care if it's gonna rain, our room is warm and stable.
Love is who we are, and no season can contain it.
Love would never fall for that.

Let love lead us, love is Christmas.

Why so scared that you'll mess it up? Imperfection keeps you haunted.
All you need is your best, my love. That's all anyone ever wanted.
Love is how we do, let no judgment overrule it.
Love, I look to you, and I sing.

Let love lead us, love is Christmas.
Let love lead us, love is Christmas.

Thankful Every Single Day

2011-11-26T19:06:00.003-07:00

Well, we all know how much I really enjoy spending time with Miss Hailey and Thanksgiving certainly is a perfect time to reflect on all of the blessings we have in our lives. I would be lying if I said that it didn’t bother me to watch her struggle as she attempted to eat the whipped cream off of the spatula from the pudding pie that she and Natalie made for dessert. Of course I wish that such a simple task could be accomplished without such difficulty, but for Hailey, it will always be difficult. But we will never forget that the mere fact that she is here today is truly a blessing.

Life certainly has a way of throwing you curve balls, but it is how you deal with them that defines your character. I am so proud of the way Tommy and Natalie have grown both in maturity and character since Hailey’s birth 4 years ago. As young parents they have learned more about life lessons, health issues and therapy sessions, than most of us will ever learn in a lifetime.They have learned more than they should ever have to know. When you have a child with a disability it is important to be able to look past the medical issues, past the limitations and all of the challenges that someone like Hailey faces every single day.They even have to look past the ignorance of others. Instead the importance lies in seeing the beautiful and courageous little girl that Hailey is. After all, that is what defines her anyway... not her disability.

For others it may seem a bit difficult to see their blessings, especially in this challenging economy, some have lost their jobs, others their car payments or the luxury of enjoying a night out to dinner. To my family our blessings are quite clear. Hailey is our blessing. We see things a lot more clear than in years past. We celebrate every achievement, no matter how small. Our priorities have shifted and our lives have completely changed, because when someone that you love has Cerebral Palsy, (or any disability) it’s as if the entire family has Cerebral Palsy, and you know what, we wouldn’t have it any other way, because we will never let Hailey go through this alone. We count her as our number one blessing, not only on Thanksgiving, but every single day.

Yes, Let's.

2011-11-24T00:01:00.002-07:00

Lego Social Skills Club...

2011-11-22T00:01:00.001-07:00

Many of our children struggle with social skills, initiating and maintaining social conversations, and developing friendships among peers their own age.

I came across this short video and thought it might be an idea that would be helpful to families. Perhaps it could be adapted to fit your child and their needs and interests (Legos, Star Wars, Polly Pockets, etc).

Rollin' With Zach

2011-11-21T00:01:00.001-07:00

Official Trailer: Rollin' With Zach

Zach Anner is obsessed with travel. In Rollin' With Zach, he takes an authentic and often humorous approach to seeing the country, as he hosts his own half-hour travel series. Zach may have cerebral palsy, but that's never stopped him! In every episode, Zach explores a new city and conquers his "top five" list for the destination.

In season one of Rollin' With Zach, he travels from coast to coast, visiting Los Angeles, Chicago, New York, San Francisco, Las Vegas and Portland. Each episode is filled with humor and emotion, as Zach meets new people, indulges in his favorite treats, and attempts new and exciting experiences he never thought possible! From surfing to sailing, rock climbing to water-skiing, he challenges himself to try the unexpected, and at times - the seemingly impossible. And when things don't go as planned, Zach embraces the problem with his sharp sense of humor and a positive attitude, because travel is an adventure and sometimes you just have to "roll with it!"

Rollin' with Zach will premiere with back-to-back episodes beginning Monday, December 12 from 8:00 - 9:00 p.m. ET/PT.

Unlock the Doors of Heaven

2011-11-20T12:01:00.001-07:00

No Limitations

2011-11-20T00:01:00.001-07:00

THANK YOU to Nicole for sharing this link with us.

You can listen to the song or download it by clicking here.

Within the womb I formed you
I fashioned and made each part
I thought of your fingers, your hands and your feet
Your mouth, your lungs, your heart
Though you might think that you’re different
I made you the way that you are
So you could discover the God who made you
And find out all I am

And though you might think you have limitations
There are no limits with me
When you turn your eyes to my salvation
Finally you will see

In Me, you have all that you need
In Me, you have all that you need
In Me, you have all that you’ll ever need.

And I’ve heard each prayer that you’ve called out
“Why did you make me this way?”
You may not completely understand now
But there will be a day
When I make everything known to you
And what you don’t now understand
You will see that I”m wise and I’m mighty and good
Just like all my plans
And if you trust in the work of my Son
One day you will see
That I’ve made you the way you are
To draw your heart to me
To draw your heart to me.

Friends

2011-11-19T18:47:00.001-07:00

White Stripes "We're Going To Be Friends"
Produced by D-PAN, the Deaf Professional Arts Network
www.d-pan.org

2012 Prep

2011-11-15T00:01:00.000-07:00

I know, I know, who's thinking about 2012 yet?

Well, if you are, then this printable calendar from About.com

with love notes for special needs parents is for you!

Burdens Into Blessings

2011-11-13T00:01:00.000-07:00

Blessed

2011-11-12T00:01:00.000-07:00

It's the first two lines of this song that touch me the most.
Welcoming and being grateful in ALL circumstances...
THAT is the key!

I welcome the sun,
the clouds and rain,
the wind that sweeps the sky clean
and lets the sun shine again.
this is the most magnificent life has ever been.
here is heaven and earth
and the brilliant sky in between.

blessed is this life
and I'm gonna celebrate being alive.
blessed is this life
and I'm gonna celebrate being alive

I dwell in the darkness
I let in the light
I sleep in the afternoon
and become the noise in the night
I trespass in temptation
suffered in sacrifice
but I awake each day with a new sunrise

blessed is this life, oh
and I'm gonna celebrate being alive
blessed is this life, oh
and I'm gonna celebrate being alive

Thanksgiving Fun Ideas

2011-11-11T21:25:00.005-07:00

There are a BAZILLION cute turkey & Thanksgiving ideas, but I picked out just a few of my favs to share with you all! I really cannot believe it's almost Thanksgiving. Where oh where does the time go!?!?!! Images linked to sources.

BElieve in YOUrself!

2011-11-10T00:01:00.000-07:00

"It is easier to build strong children
than to repair broken men."
~Frederick Douglas

I think one of the most, if not THE most, important lesson you'll ever teach a child is self-confidence. The activities, people, careers, entertainment, and almost everything we fill our life with is a reflection of how we feel about ourselves. Therefore, it is a gift to your child to teach them to feel PROUD of who they are! To be comfortable in their own skin! To be authentic!

To me, this picture from Cassie of Beyond Measure says it all. Her son, Caleb, ASKED his mom to take this picture. It screams of a young man who knows who he is and is proud of it! I wish everyone, with special needs or not, felt this happy to be who they are! (Thanks for letting me share, Cassie!)

I've compiled a board on Pinterest (kidz ~ building self esteem) with quotes & thoughts about building self esteem. Here are just a few, but check all of them out when you have a chance! (Images linked to sources.)

What do you do to build your child's self-esteem?

Peyton's Story

2011-11-09T09:00:00.000-07:00

Peyton’s story begins long before she was born when her father, Travis, and I met in high school. We were high school sweethearts but before graduating went our separate ways. I went on to marry another for almost 8 years. He moved out of the state but remained single. Fifteen year passed before I contacted him. A year later I moved to California to be with him. Since both of our families were in Utah as was my job we were on our own without a safety net.

We knew we wanted children and because of our age, decided to get started immediately. We were thrilled to discover I was pregnant within just a few weeks of trying but just days later and only three days before our wedding – I suffered a miscarriage. But our hopes soared quickly when less than a month later we had another positive pregnancy test. We felt certain that it would be a girl. I remember hearing of the show Peyton Place as a child and loved the name. So just days after discovering the pregnancy we had named our baby to be Peyton mere weeks before Peyton Manning won the Super Bowl!

The pregnancy seemed to progress well until about the 25th week when I went into preterm labor. After some rest and fluids the contractions stopped but it was our first hint this pregnancy could be at risk. At about 32 weeks I surprised Travis with a 3D ultrasound. The technician had previously worked in a high risk maternal fetal group and was seeing some things that concerned her. She recommended we have the hospital perform another ultrasound. Within days of that ultrasound I got a call from my obstetrician recommending we seek yet another ultrasound at the high risk maternal fetal group in the area. After two ultrasounds that were concerning we weren’t surprised that after the third ultrasound was completed the geneticist wanted to meet with us. Peyton was showing signs of a syndrome but at the time they didn’t know which it was. She had micrognathia as well as several measurements that were smaller than average. Just weeks out from delivery the geneticist let us know that there was nothing more to be done and we would have to wait until after she was born to learn more.

On my hospital tour I had already discovered that it did not have the highest level NICU and with a potential airway issue I consulted my obstetrician about potentially transferring my case to another hospital but she did not seem concerned. I also recommended a scheduled c section to ensure all the necessary specialists were in place but also due to my mother’s history of barely making it to the hospital for delivery. Again, I was rebuffed so I hunkered down to wait for labor to begin. We had a few weeks to contemplate the news that Peyton may have some medical issues, but without any knowledge of the particular syndrome there was no ability to prepare for what was to come.

I was four days past due when my labor pains started. When I first realized they were contractions they were only 3 minutes apart. When I called my obstetrician she didn’t seem overly concerned since they weren’t very painful and suggested I stay home until they worsened. Within minutes of hanging up the phone with her they intensified and by the time we made it to the hospital about 15 minutes later there was no mistaking that I was in labor. I was only dilated to a one, though so they initially considered sending me home but just a few minutes after that assessment Peyton’s heart rate dropped. The room filled with people and after having me change positions her numbers returned to a healthy level. The scare coupled with my rapidly progressing labor, they decided to go ahead and put me in a room but just moments after getting me there Peyton’s heart rate dropped a second time and they were having a difficult time getting it back up. A quick decision was made to proceed to the operating room for an emergency c-section.

Initially I was focused on getting the epidural and as the painful haze was replaced by numbness I realized she was out but it was not like any baby show I had ever seen. They immediately moved her behind where my husband sat and I caught a glimpse of thick, black hair but no one said a word. I looked at my husband and above the mask saw my fear reflected in his own eyes when I kept asking why she wasn’t crying. He just shook his head because he didn’t have any answers either. Within moments he was hustled out of the operating room and I don’t remember anything else until I woke up in recovery later.

I am not sure how long I was out, but Travis had been taken to a small waiting room. During that time he made some panicked calls to family back in Utah. Eventually, a nurse brought him back to the NICU to see Peyton. Early on we were told that Peyton was in respiratory distress and due to her abnormally small jaw her airway was tiny. After reading her medical records, I later learned that the umbilical cord was wrapped around her neck twice and she had aspirated meconium, further compromising her ability to breathe. In that first hour, they tried twice to intubate her and were not able to so they had an ambulance on the way to pick her up and transport her to UC Davis Medical Center because they had the highest level NICU in the area. Before the transport team took her away, they wheeled her incubator to my room so I had a chance to see her. Travis had a few moments to check on me before he followed her to the hospital. My sister and brother were on a plane within hours of my husband’s call and they helped to keep me entertained while he was monitoring Peyton’s condition. Later that evening he returned to the hospital I was at and for the first and virtually only time, he broke down. I must still have been in shock because as he was crying I felt completely unemotional. I was so distant that my sister expressed concern to her husband on the phone that night. It wasn’t until the next morning when I called the NICU to check on Peyton’s status that it all came crashing down. When the NICU nurse asked me who I was I sobbed as I said, “I’m her mother”.

That first day, Travis had to make a decision to allow a breathing tube and a PICC line. I was released on her third day of life and had one opportunity to see her before we had to make the difficult decision to allow the doctor’s to perform a tracheostomy. I didn’t realize it at the time but I was suffering from a spinal fluid leak. Despite going in for a blood patch on the fourth day of her life, it didn’t work and it took a week before I could stand without agonizing headaches. But during that week, I refused to let it stop me from seeing her and after a 30 minute drive to the hospital each way, I would walk several football fields to get from the parking lot to her bedside with my head throbbing and recovering from the c section. It was my first taste of what it meant to ignore my needs in lieu of hers.

Within the first week of her life, the geneticist at UC Davis informed us that they believed Peyton had Nager Syndrome. It was very rare – at the time there were less than 100 diagnosed cases. There was no genetic test so the diagnosis was made on her clinical symptoms: micrognathia, abnormal palate, overlapping toes, fused bones at the elbow, shortened forearms and her craniofacial differences. We would later learn she had no ear canals and had severe hearing loss in both ears and also had aortic valve disease. Peyton would spend six weeks in the NICU and during that time she would have a feeding tube placed. When she finally came home our house was full of machines and medical supplies. We were so fortunate to have nursing because without any family or friends close we had a lot to learn.

In May of 2010, we moved to Utah to be closer to our families and we are currently living in Sandy. Peyton is now four and attending preschool.

She is still trached and still has a feeding tube. There is probably no chance of either being removed in the next several years. In the last year she was also diagnosed with asthma with her trigger being cold & flu. But despite nine upper respiratory infections over five months last year we avoided any hospitalizations. She is healthy and her airway is stable, in fact she can spend most of the day with a cap over her trach tube. She has had three hand surgeries and two jaw distractions and will have plenty more surgeries in her future.

Peyton is a firecracker with a very engaging, dynamic personality. She is outgoing and social despite her speech difficulties.

With the recent addition of an iPad with a communication app we are hoping she will have the ability to communicate more easily with others. Because there is no data on the likelihood of having another child with the syndrome, we have chosen not to have any additional children, but Peyton is kept company by her two furry brothers – Henry and Chili. She also has two sides of her family that spoil her rotten and embrace everything about her – we are so fortunate in that regard.

A few weeks before her birth, I started a blog and it became a source for family and friends to follow her progress. Years and eight hard bound books later, it is a baby book beyond anything I could have imagined. Not only does it track her medical progress but it gives a peek into her world – the good, the bad and the ugly.

We derive support from many sources – tracheostomy.com, the Nager and Miller Foundation, Hope Kids, and the blogs of other special needs parents and our family and friends. Finding the Kidz website is just one more place to feel acceptance and understanding and we are excited to be a part of it!

By Peyton's mom, Tracy. You can read more about their journey on their blog, Peyton's Place.

Diagnosis

2011-11-09T00:01:00.000-07:00

If your child has been diagnosed with Cerebral Palsy, then this video is worth watching.

Diaper Solutions

2011-11-08T00:01:00.002-07:00

When Chloe needs anything that I can't find at Target or Costco, I go a little haywire.... what am I going to do!?!? Well, little missy is growing out of the typical-sized diapers, so I've asked around for incontinence solutions and gotten lots of great tips!

These websites have been highly recommended...

Home Delivery Incontinence Supplies

Activ Style Incontinence Supplies

You guessed it, Amazon.com.

These are the brands that have been most highly recommended. Tena for daytime and the others for nighttime....

Most sites will send samples so you can figure out what works best for your little one. You can also check with your county/state departments to see if these types of supplies are provided. Also, you can ask your doctor to write a prescription for incontinence supplies to try to get them covered through your insurance company. Just make sure the correct diagnosis/ICD-9 is used for incontinence.

Please leave a comment if you have any other tips or tricks up your sleeve when it comes to diaper solutions!

Fifth and Goal

2011-11-07T00:01:00.000-07:00

He was 18 months old when they told us he would never walk - or talk - or have any civilized quality of life. They wanted to put a permanent feeding tube in him and put him in a half-way home. They told us we would not want to be burdened with raising a child with so many challenges. They patted us on the back and told us it would take a Billion dollars to “fix” him. They were the most distinguished hospital in the World – but he was our Son - and we wanted nothing to do with their advice.

He never got that feeding tube. He doesn’t take medications. His name is Carter, and he is our 8 year old son. Carter was born with a rare neuromuscular disorder called Alternating Hemiplegia of Childhood. There are about 340 cases in the World. It is a paralysis disorder, with episodes brought on by a wide array of triggers. Barometric pressure change and severe temperature swings account for many of his episodes. Over-stimulation or surprises from any source also cause paralysis. Through most of his life, Carter has faced these episodes nearly 75% of the time. Today, in the stable Texas climate – Carter deals with dramatically fewer episodes. There isn't a day that goes by that Carter isn’t affected by this disorder.
So here goes the story:

Carter’s younger brother, Spencer, plays flag football with the Lake Travis Youth Association. When the league struggled to put together enough coaches to handle the large number of kids, I reluctantly stepped up to fill a pair of coaching shoes. I had never coached football. As it turns out, teaching 5 and 6 year olds to play football could be better defined as herding ants.

This past Saturday was just another rewarding (um, frustrating) day on the field. My players were not listening or paying attention – and the other team was taking advantage. We were on the receiving end of a pretty good beating, but we managed to keep the game close. We were down by one touchdown with little time left in the game – and we were “lucky enough” to get the ball back. Unfortunately, we went through all four downs with no success. Our kids dropped the ball, ran the wrong direction, and got tackled behind the line on all four downs. We did all the wrong things and turned the ball over on downs.

It felt like five minutes had passed while the opposing team tried to get their offensive players out of the huddle. I was already irritated and could not understand how such a fast-paced game, with running time, all of the sudden felt like we were in a rain delay.

I caught some movement from our sideline – and looked over to find Coach Bill walking on the field with Carter at his side. Carter might be the biggest Lake Travis football fan in history - but he is not supposed to be on the field. He LOVES being at ALL the football games – especially Spencer’s. As they walked closer, Coach Bill said “Put Carter in at running back for this play.” “He can’t,” I said. “We turned the ball over on downs – and besides – he’s not even on the team.” “Just put him in and run the play,” Bill said. Getting more agitated, I said “Look, Bill – It’s not our ball and he doesn’t know what to do.” “Just listen to me and do this,” he said.

I turned to the head referee and said “hey stripes, am I missing something? Did we not just turn the ball over on downs?” He walked over, got eyeball to eyeball with me, and in a stern voice said “yes you did – but number 10 here is ready to get his first touchdown – are you okay with that?” Side note: Carter is a regular at all the games and practices, so he wears a “left-over” #10 jersey to all the LT games.

So with everyone on the field aware of what was developing - except for me and head coach Jen – we were given a “fifth down” and a dream come true. With Spencer at quarterback and Carter set up in I-formation, the sun stood still. For thirty seconds. And Carter ran 40 yards for a touchdown while everyone cheered for him. You would have thought we had just won the Super Bowl. I had never heard cheering like this. It was deafening. Carter had never shown so much emotion. He was so proud – and so were Sara and I. The head coach from the opposing team put Carter up on his shoulders and marched him around the field. Everyone rushed out on the field - and there wasn’t a dry eye to be found.

This is Carter’s story. One that beats adversity. One that overcomes challenges. One that opens hearts and changes lives. Carter is a gift from God and I treasure him with all my heart.

This is a beautiful story and I hope I am giving it justice. I still don’t know who made this happen – but everyone was on board. The opposing team, the parents, players, coaches and even the referees. In a heated moment with the game on the line – the Sun Stood Still – to give God the glory and give Carter a moment he WILL NEVER FORGET. It was a priceless moment. One of those moments you read about or watch on youtube – but never get to experience in the flesh.

I am honored to cast my deepest heart-felt appreciation to everyone at the field on Saturday. To the Bulverde (San Antonio) flag football team for lifting Carter up high – for one moment that will last a lifetime. To the coaches I work with – for making this moment so special and honoring Carter with a medal for his efforts. To the head referee, who with tears in his eyes and a choked-up voice, issued Carter the “official game coin” and suggested that we frame it and remember this day forever. To the parents and fans at the game – your cheering will ring in our heads for decades. To all of you that have helped with Carter - prayed for him - and gave us the hope and courage to fight for his future. Today, we lift all of you up – because you all deserve it.

This is a great story and I will cherish it forever… Whatever battles you may be fighting today – fight them with courage – and give all the glory to God. He has a plan for your life – even when it seems to be spinning out of control. It might require a “Fifth Down,” but He will be there for you – just give Him the reigns… Only He can make the Sun Stand Still.

Every. Time.

2011-11-06T00:01:00.001-06:00

Roll With the Punches

2011-11-05T09:54:00.005-06:00

This is my anthem this week.
Chloe has been having
seizure activity,
reflux,
constipation,
allergies,
and not sleeping.
I feel like we're taking hit after hit!
But I'm learning to just roll with the punches :)

Once I shake off all these proverbial fists to the face, I will get back to my routine kidz posts. I have lots of wonderful stuff to share!!!

Loading Wheelchair Into Van

2011-11-01T00:01:00.001-06:00

Having a child that is non-mobile puts a lot of stress on your back. To help ease the burden and awkward movement of loading and unloading my daughter's manual adaptive stroller into our minivan, I use a suitcase ramp.

We bought our ramp new, but I have seen some great deals on Craigslist and would check there first when we are in the market for another one.

Here are a few other ramp options. Images linked to sources.

It's Fantastic.

2011-10-31T00:01:00.001-06:00

It's worth 41 seconds of your time to start your Monday with a smile. Promise.

Source.

Beautiful Heartbreak

2011-10-30T00:01:00.000-06:00

These lyrics are stunningly beautiful and poignant to how I feel about living this special life!

I had it all mapped out in front of me
Knew just where I wanted to go
But life decided to change my plans
And I found a mountain in the middle of my road.

I knew there was no way to move it
So I searched for a way around
Broken-hearted, I started climbing
And at the top I found

(Chorus)
Every fear, every doubt, all the pain I went through
Was the price that I paid to see this view
And now that I'm here I would never trade
The grace that I feel and the face that I find
Through the bittersweet tears and the sleepless nights
I used to pray He'd take it all away
But instead it became a beautiful heartbreak.

I never dreamed my heart would make it
I thought about turning around
But Heaven has shown me miracles
I never would have seen from the ground

Now I take the rain with the sunshine
Cuz there's one thing that I know
He picks up the pieces along each broken road.

(repeat chorus)

Hold Me

2011-10-29T00:01:00.002-06:00

Source: piccsy.com via Kathleen on Pinterest

Special Needs Financial Guide

2011-10-28T00:01:00.000-06:00

Guest post by Benjamin Weiss of MetLife’s Center for Special Needs Planning.

Families with children or adults with special needs are confronting cuts in services and assistance even as they look for more guidance to make financial and other pressing decisions, a new, in-depth MetLife study found. As they experience a harsher economic climate, family caregivers are seeking meaningful information to help with special needs planning for their dependent. “I do believe the resources in my community will continue to disappear… I think parents will have to be more creative,” noted a caregiver in California who was one of the 1,000 individuals who participated in the MetLife Center for Special Needs Planning℠ 2011 Torn Security Blanket poll.

“The mixed picture painted by the poll findings and follow-up interviews with caregivers shows that a struggle exists for many of these families. Part of the struggle is to obtain useful information in a substantive context instead of scattered pieces from various sources. But at the same time we see the amazing perseverance of caregivers who are almost always willing to take a few additional steps in order to build a sounder financial framework for their dependents. This is an encouraging sign compared with our original study from six years ago,” said Kelly Piacenti, director of the MetLife Center for Special Needs Planning.

On the positive side of the ledger, 38 percent of caregivers have written a Will, compared to 32 percent in 2005, and 36 percent planned for their dependent’s future housing, up from 31 percent. The greatest area of growth was in the number of caregivers setting up special needs trusts – 21 percent reported setting up a trust, nearly double the amount in 2005.

Still, much remains to be done from a planning perspective, the study found. While, seven in ten caregivers responded that they had completed at least one financially related task, many have yet to address crucial gaps. For example, less than half (49 percent) of caregivers have identified a guardian for their dependent should they no longer be able to care for them. More than half (56 percent) said they are unfamiliar with the steps needed to identify a trustee to watch over their dependent’s financial holdings in the future. Another 55 percent weren’t sure how to set-up a plan for lifetime financial assistance for their dependent.

Caregivers Dissatisfied with Available Planning Information, Need Education and Guidance

A key factor in this inaction appears to be the difficulty that many caregivers encounter when looking for information and guidance – especially in the area of special needs planning. Caregivers are less likely to use a single source for financial information than they are for medical or educational information – perhaps pointing to dissatisfaction with the information available for planning, and the need to go to several places before finding solid assistance. What’s more, more than half (59 percent) of caregivers said there is too little information available about financial assistance (benefits and support provided by government agencies) and 55 percent said that it is very difficult to find. Only about one-third of families say they receive a support service, and, although they may not qualify, many caregivers do not know why they don’t receive a service. At the same time, 69 percent said that they are very concerned about being able to provide lifetime care for their dependents with special needs.

Employer Assistance Welcome

One avenue for planning assistance that appeals to caregivers is their employers. Over two-thirds say that access to a special needs planner would be helpful if provided by their employers, while 64 percent would welcome employer-sponsored workshops on special needs planning and access to legal services. Three-fourths of caregivers are likely to attend workshops about special needs planning if offered by their employer.

“With millions of American workers caring for a child or adult with a special need, this is very much a timely issue in the workplace, and it provides employers an opportunity to help,” said Michael K. Farrell, executive vice president at MetLife. “Providing support and education for these caregivers promotes greater employee loyalty, lowers stress, and contributes to a more productive workplace. Programs, such as the special needs planning workshops that MetLife provides through PlanSmart℠, can be a valuable addition to a benefits menu,” he added.

Ten Steps to Help Caregivers Plan

To help address a range of concerns, the MetLife Center for Special Needs Planning has created ten steps of Basic Financial Guidance for Caregivers. Each circumstance is unique, so caregivers should consider their own situation as well.

1. Plan for future medical, educational and housing needs for your dependent. Start by thinking about what your dependent’s needs will be in the future – and develop your financial strategy based on these projections. Will they need weekly daily medical treatments? Will they need funds for college? Would they live in a group home or need their own space?

2. Review beneficiary designations. To continue to receive federal aid, dependents with special needs cannot have any assets in their name (cash, art, jewelry) that is worth more than $2,000. Check with close friends and family to see if they have designated your dependent to receive any inheritance or insurance benefits from their estate– if they have, it’s important that they leave this amount to your dependent’s special needs trust (see number eight on this list for information on trusts). Don’t let well-intentioned friends and family unknowingly cause your dependent to lose access to valuable resources.

3. Have a family meeting to discuss your dependent's future needs. Just as caring for a dependent with special needs is a family affair, so is financially related planning. With the thoughts that you have prepared on your dependent’s special needs throughout their life, meet with your family members to discuss their concerns and options for future care. This is also a good time to broach the beneficiary designation issue discussed above.

4. Speak with a special needs financial professional and create a team of professionals to assist you in planning. Once you have determined the current and future financial needs of your dependent with special needs, it’s important to pull together a support team that can help guide you through the variety of options available to you and your family. The composition of the team may vary depending on your situation, but it may include an attorney, a health professional, and a school guidance counselor, among others.

5. Contact local nonprofit organizations for additional resource support. Your local nonprofit may be able to provide resources that can help with planning or that supplement the standard services provided by government agencies. A good starting place is to first contact a nonprofit dedicated to your dependent’s special need.

6. Apply for government benefits. Government benefits – such as Medicaid and Social Security – may help provide for your dependent’s needs in the form of medical treatments and supplies, equipment, financial assistance and more. Visit your local Social Security Office (www.ssa.gov) to find out what benefits your dependent may qualify for; call or visit their website first to find out what documents you should have with you for your visit.

7. Prepare your Last Will and Testament (review and update periodically). A Will declares how you want your estate to be distributed and allows you to select a guardian for your dependent when you pass away. It may be especially important to prevent automatic asset distributions directly to a person with special needs, and to be cognizant to not leave your dependent with special needs any assets in excess of $2,000 (as discussed in number two above).

8. Consider Setting up a Special Needs Trust. This allows caregivers a way to provide for their dependent’s care and quality of life, without disqualifying them for federal assistance. Trusts can be set up either funded or unfunded, and must be overseen by a guardian – often the dependent’s caregiver and/or a bank trust officer. Funds can be contributed gradually over the years, or designated as a beneficiary of an inheritance of a life insurance policy. The money in the trust must be used to enhance the dependent with special needs quality of life, and can help to supplement standard services and benefits provided by government agencies.

9. Apply for guardianship and conservatorship; if applicable. Caregivers must apply for a guardianship or conservatorship to maintain legal control over financial and healthcare decisions once a dependent reaches the age of 18. This can take up to a year in some states, so it’s best to start this process when the dependent turns 17. There are different levels of guardianship and conservatorship available, depending on the dependent’s capabilities and needs. For example, a limited guardianship could be solely for financial or healthcare-related decisions.

10. Prepare a Letter of Intent. Although not legally binding, this document is important for providing direction for the person or persons who will care for your dependent with special needs, and should be stored with other vital documents, such as your Will. Thinks of it as a “letter to the caregiver” – it can cover day-to-day care issues such as what medical assistance is needed, as well as quality of life guidance such as what entertainment and activities should be provided.

A copy of these steps and the 2011 Torn Security Blanket study is available at MetLife.

Methodology

To contact the caregivers of dependents with special needs, the MetLife Center for Special Needs Planning worked with the GfK Custom Research North America to conduct an online survey. A total of 1,004 panelists agreed to participate in the survey, which was conducted from May to June 2011. The margin of error for this survey is 3.2%. In addition, researchers conducted 18 in-depth online interviews with caregivers of special needs dependents.

About The MetLife Center for Special Needs Planning℠

The MetLife Center for Special Needs Planning works with national non profits and individuals to help support the mutual goal of helping individuals with special needs. The Center is dedicated to helping families plan for the future of dependents with special needs. Helping you answer those questions, directing you to the right resources, and just being there as a resource and advocate for you, is an important part of what we do. If you’d like to find out more or you’d like to be referred to a local MetLife Special Needs Planner, please call 1-877-638-3375, or visit our website at MetLife.

Give it Time

2011-10-27T00:01:00.000-06:00

FASD

2011-10-26T00:01:00.000-06:00

Hi My Name is Ann Michelle

I am the mother of two boys, Jeremy (12) and Kennan (7), both joined our family through adoption. Like pretty much everyone on your site I didn’t start my parenting journey thinking I would parent a special needs child. In fact we didn’t really understand what might be long term for my second son until a year ago. It has been a long journey to this point.

FASD

What is FASD?

Fetal Alcohol Spectrum Disorders
FASD: is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects can include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications.

FASD includes conditions such as:
¨ Fetal alcohol syndrome (FAS)
¨ Partial fetal alcohol syndrome (PFAS)
¨ Alcohol-related neurodevelopmental disorder (ARND)
¨ Alcohol-related birth defects (ARBD)
Fetal alcohol effects (FAE) * obsolete terminology.

What Are the effects of FASD?

The effects of FASD vary among affected individuals.
Outcomes associated with FASD can include:
¨ Specific facial characteristics
¨ Growth deficits
¨ Mental Retardation
¨ Heart, lung, and kidney defects
¨ Hyperactivity & behavior problems
¨ Attention & memory problems
¨ Poor coordination or motor skill delays
¨ Difficulty with judgment and reasoning
¨ Learning disabilities

“Of all the substances of abuse (including cocaine,
heroin and marijuana), alcohol produces by far the
most serious neurobehavioral effects in the fetus.”
Institute of Medicine, 1996.

Us

My husband, Delmer and I have been married 17yrs. We learned two years after our marriage and two miscarriages later that we had less than a 10% chance of having biological children. We decided with the Lord’s help that adoption was the way we would build our family and thus began our journey.

Our Family

Five years into our marriages we adopted Jeremy and four and a half years after that we adopted Kennan.

Our Story

When Kennan was first born he seem healthy and “normal”. There was nothing that noticeably indicated that there were larger issues that would rear their ugly heads in the future. Things that we noticed where not life or death and could be attributed to normal. He was born with a heart murmur and a herniated belly button. Both healed on their own. He was fussy and seemed much like a colicky baby. He did better with soy based formula and we assumed he just couldn’t yet tolerate the milk proteins in regular formula. He was hard to comfort, would arch his back when you tried to snuggle and he didn’t always like to cuddle. But, there are some kids who just aren’t as snuggly as others. As he grew into a toddler he became stubborn, uncooperative, and unwilling to entertain the word “no” if he was being restricted from doing something he wanted to do. People kept telling me this was normal “terrible twos” behavior. But it was different than anything I had experienced. My gut instinct told something was “off” and “just not quite right” but I bowed to those with more experience and hoped they were right about him out growing all the little things that we were seeing. Then came his preschool years. He was have trouble with language acquisition and speech problems. People would tell me he was hard to understand – even I had a hard time always interpreting what he was trying to say and I am a full time stay at home mom. When we finally were able to get him evaluated by a speech pathologist she couldn’t find anything wrong. But the problems persisted and he was evaluated again in Kindergarten with the same result. His behaviors had also slowly begun to escalate and he was getting more noncompliant regardless of what we tried. We ask about things like ADHD and ODD – but where told that most doctors will not evaluate for either of these until around six because many kids do grow out of these behaviors. Again I didn’t listen to my gut instinct (I’m a slow learner) and bowed to those with more “experience”. Kindergarten was difficult but he seemed to manage with help. Kennan had a hard time learning the Alphabet and an even harder time putting sounds with letters. However, he could “read” a number of sight words. Money and time were difficult (although this can be common in many kids). He had a hard time consistently remembering his basic shapes – but had his basic colors memorized. Days of the week meant nothing to him and forget months of the year. He couldn’t even tell you his birthdate. His teacher and we were seriously talking about repeating Kindergarten. But with lots of help he pulled it together and rallied to meet the benchmarks necessary to advance to First Grade. His behaviors also increased. He was becoming angry and aggressive when frustrated and would hit, pinch, kick, and bite family members when he didn’t get his own way. He would also attack his brother without provocation. By first grade things had escalated even more. Both my husband and I had noticed that he didn’t always seem to “get it” or learn from consequences – both natural and disciplinary. School was becoming more of a battle he was having trouble staying on task and completing work. Homework was nearly impossible because he would through terrible temper tantrums when ask to do it. We were now beginning to understand that we had bigger issues than what he would just grow out of. In September of 2010 I came across an interview on ABC News about a couple who were parenting a child with FAS. As I listened to this mother describe some of the things they were dealing with, with this child it dawned on me that what she was describing sounded just like many things we had seen in Kennan. I “Googled” FAS/FASD and what I began reading that day left me a bit numb and shocked. It was like the authors of these sites had been living with us for the past six years. They were describing my child. But, I felt a little confused too. The paper work that Kennan’s birthmother had filled out for us stated that she had not participated in drugs or alcohol while she was pregnant with him. However, I had a vague unsettling flashback to a brief piece of conversation I had with Kennan’s birthmother a few hours after Kennan was born. But six years had passed and I just couldn’t be sure if what I was remembering was accurate since the conversation was just in passing and had happened so long ago. I called my husband at work and ask if he remembered if Kennan’s birthmother had ever mentioned drinking while she was pregnant. He said he wasn’t sure it was too long ago. I ask him if he had time that day to look up FAS/FASD and tell me what he thought. When he walked in the door that evening the first thing out of his mouth was, “that’s Kennan isn’t it?” All I could do was nod. We knew that we needed to have Kennan evaluated, but where to start?

We took Kennan to our primary care pediatrician. She diagnosed him with ADHD – it would be the first of a growing list of disorders. This time however , I listened to my gut instinct. I knew from my reading that many alcohol exposed children are misdiagnosed with ADHD. So we kept pushing, slowly at first, and later more forcibly. We agreed to try him on Ritalin for three weeks. It made the aggressive, argumentative, and out of control behaviors worse – but only as the medicine was leaving his system. But it did nothing for the of task or lack of concentration behaviors. We then tried him on Adderall. This was worse than the Ritalin. He was explosive. During this time I had called our caseworker (at the time of Kennan’s adoption) and ask if he would please do some digging to see if we could find any documented proof that Kennan’s birthmother drank while she was pregnant. He agreed to see what he could find. About a week later he called us back and confirmed what we already suspected. Indeed Kennan’s birthmother had drank during pregnancy and she had also used cocaine. But, for Kennan the alcohol was the bigger issue. We do not have an amount, how often, or when during pregnancy she drank – just that she did. We were now into December and things came to ahead. When Kennan got out of school on the last day before Christmas break he went into a massive meltdown. It was on again, off again, meltdown for the next six hours. At nine o’clock that night I had him physically pinned to the floor in our living room to keep him from being able to physically attack me in any form. He was crying and I was crying. When I finally got him calmed down enough for us to sit on the sofa he turned to me and with tears running down his face he said to me, “Mommy, mommy, I don’t want to be this way.” It was like he had pierced my heart with a dagger. I cradled him and cried telling him how sorry I was that things were so difficult for him and promised him we were doing whatever we could. The next day we met with the pediatrician. We went armed with the evidence of alcohol exposure and some “mama bear” attitude. We took him off all the ADHD medicine and demand to be sent for an evaluation with specialist who could dig a little deeper.

In May of 2011 he was seen by those specialists. I wish I could say that we had all the answer when we left that day. Far from it!!! There is no “magic” blood test to determine if a child has an FASD and Doctors don’t like to give that diagnosis. When we finally got the medical report this summer Kennan added several more disorders to the ADHD. He is now listed as having ODD (Oppositional Defiant Disorder), SPD/SID (Sensory Processing/Integration Disorder), DBD (Disruptive Behavior Disorder) and an unspecified Learning Disorder with the possibility of an FASD (Fetal Alcohol Spectrum Disorder – more specific ARND (Alcohol Related Neurodevelopmental Disorder)). And if the Psychologist that we saw this last summer ( a whole other story) had his way we would add CD (Conduct Disorder) to that list. My son’s diagnoses are starting to resemble alphabet soup. So this Wednesday (Oct. 5, 2011) we are off to see the Geneticist for further evaluation.

Meanwhile my son sees an OT once a week for his sensory issues, we struggle with getting him to school and getting school work done (he doesn’t qualify for any services at school at this point because he isn’t two years behind – massive frustration) and we have just received approval to start our fundraising for his service dog (specially trained to meet his needs). And despite all the above disorders there are many people who still think he doesn’t have any special needs. You see when Kennan walks into a roomful of other second graders he appears (and often acts) like any other kid his age. He has learned to “keep it together” at school for fear of what other kids will say. Because many kids with FASD are like Kennan FASD has become known as the invisible disorder. They want him to,”just buck up, work harder, quit goofing around, stop being lazy, pay attention, stop the behavior, and just get the job done,” never trying to understand that maybe just maybe he can’t – he has brain damage and it’s permanent – that doesn’t mean he can’t be successful – but it does mean he might have to do it a little bit differently than many other children.

Low Tech Yes and No Response

2011-10-25T00:01:00.000-06:00

We were looking for a good way to for my non-verbal daughter to communicate so we started with a Yes and No response. After several techniques failed it seemed she had the most consistent response with the Yes No Answers app on the iPad. However, the iPad just isn't always available and we have lots of kids in the neighborhood that include Emma and they ask her questions and it's awkward for her to have me get in the way with an iPad for her to respond. It totally ruins the moment and then Emma ignores the iPad and me because there are kids around. So I decided to try a method that works well for another family that I know. It's low tech, super easy, and everyone including the kids can use it without any help. Let me tell you what we are doing. Basically, whoever wants to talk to Emma can ask her a question and then you hold out your right hand with your palm open facing her and your left hand fisted facing her and ask her yes (shaking right hand) or no (shaking left hand). Emma thinks about her response and then reaches out for the appropriate hand. It didn't take much time to get her to be very accurate with this method. And since we've been using this a few weeks now she knows which is Yes and No so we don't have to shake it anymore. I'm hoping that eventually we won't even have to say Yes and No when giving her the hand signal but that could come in time. For now I'm super excited that we have a method that Emma and that anyone can use with Emma. I created a card to laminate and attach to her wheelchair as an easy way to remind (or introduce if it's a new person) people about how Emma answer's questions.

Halloween Activities

2011-10-24T00:01:00.003-06:00

Have a Halloween party coming up? We had one last night, but still have more to go, so I gathered a few activity ideas and thought I'd share them! (Images linked to sources)

Pop! Goes the Pumpkin!

Pin the Bow on Mr. Skeleton

Boo Bowling =]

Pumpkin Felt Board

Thumbprint Craft Ideas

Scavenger Hunt

Bingo (free printables)

Hope you have fun, no matter what you do! Happy Halloween!!!

Simplicity in Suffering

2011-10-23T13:11:00.002-06:00

Guest post by Sue Lee of Lee Life & Lessons. Shared with permission.

This season of respite for our family has extended beyond my expectations. I’ve been waiting for the proverbial other shoe to drop for a while now but it’s still hanging onto my toes for some reason. Marcus has been doing really well and his contentment and progress in so many areas have been a huge encouragement to us. Our family has reached a new normal in living with Marcus’ disabilities and although there is an eternal heaviness in our hearts, we’ve been able to breathe a lot easier. I have a funny feeling that we’ll be looking back on these years as the golden era of parenting. I’m supremely thankful for this time.

I can’t believe I’m saying this, but there really are sporadic moments (albeit very short ones) when I forget our dear son has a terrible syndrome. But certain things will trigger the emotions of how we felt in the darker moments of this journey, when grief, sadness, and anxiety were close friends. And there is a sliver of my heart that kind of misses those times. I don’t miss the despair as much as how God used the despair to teach me and draw me close to Him.

There is a certain simplicity to suffering that I miss. When I’m low and crushed, my life somehow gets reduced down to 3 simple things:

1. God loves me.
2. God loves my family.
3. God loves others.

Which then causes me to respond with 3 simple things:

1. I love God because He loved me first.
2. If God loves my family, I trust that He will take care of my family.
3. If God loves others, I want to pray for and care for others who are suffering.

But I realize that I often over-complicate my life needlessly. I preoccupy myself with the unimportant and the transient things of life, being distracted by everything that life entails. So in these seasons when I’m breathing a little easier, I want to cry out to my Lord:

Because your steadfast love is better than life, my lips will praise you. So I will bless you as long as I live; in your name I will lift up my hands. My soul will be satisfied as with fat and rich food, and my mouth will praise you with joyful lips, when I remember you upon my bed, and meditate on you in the watches of the night; for you have been my help, and in the shadow of your wings I will sing for joy.

Psalm 63:3-7

Angel

2011-10-22T12:01:00.001-06:00

Angel - Jack Johnson ♪

I've got an angel
She doesn't wear any wings
She wears a heart that could melt my own
She wears a smile that could make me want to sing

She gives me presents
With her presence alone
She gives me everything i could wish for
She gives me kisses on the lips just for coming home

She can make angels
Ive seen it with my own eyes
You got to be careful when you you've got good love
'cause them angels will just keep on multiplying

But you're so busy changing the world
Just one smile and you could change all of mine
We share the same soul
Oh oh oh ohh

We share the same soul
Oh oh oh ohh
We share the same soul
Oh oh oh ohh
Oh oh oh ohh
Mmm mmm mmm mmm

Images linked to sources.

We Go Together

2011-10-22T00:01:00.001-06:00

Source

This song is available for free download here.

Parents' Rights

2011-10-20T00:01:00.000-06:00

By Jenifer Simpson of UCP

Being the parent of a child with disabilities is not really a whole lot different than being a parent of an average child, or so they tell me, but I really don't know because my only child has severe disabilities as a result of cerebral palsy. It is just that such a fuss can be made about it by your friends or family or the professionals around you. The biggest difference is probably that after you get through the first hoop of finding out about your child's disability, you will find the volume of work is bigger, louder and more compelling.

However, at the outset many professionals talk about parents going through something called 'the grieving process' when they first learn of their child's disability. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief where parents are thought to mourn for the loss of the "perfect" child that most parents hope for and expect. Then comes denial, according to this theory, where parents deny that their child is really disabled, or perhaps seek out other doctors to get second, third and fourth opinions. Anger and resentment come next, which may include going on searches for cures or fixes, and then finally comes acceptance.

This theory about stages of feelings -- shock, grief, denial, anger and acceptance -- will often be used by the professionals around you.

Doctors, therapists, teachers, early intervention specialists, case workers, disability advocates, lawyers, and a myriad of others who interact with you and your family may describe your feelings and sometimes your actions to you using this feelings model. Although, this grieving process is only a theory, it is widely believed, and you may in fact have all these feelings. But you also will find you don't fit this scenario and may feel you are being told how to feel and resent having certain beliefs or thoughts imposed upon you.

You have the right to whatever feelings you may have, and you may find that the course of your feelings is not like the linear model of this theory. For instance, I cycle through denial and anger periodically in new ways when I am confronted with a new aspect of my son's disability or when I must deal with a new set of therapeutic procedures for him. Occasionally there is something that sets off my 'grief', such as soapy television story or news event that evokes this feeling. Even though I am now ten years into 'accepting' my son's disability, I still have the right to go cry again.

The following is a discussion about feelings and thoughts that may assist you when it all gets a bit crazy.

Anger

Nothing in life really prepares anyone for being disabled and when it is your baby or child who is suddenly the recipient of this label, life may suddenly seem very unfair. You did not ask for this, and there is very little you can do to change it. Your sense of control over your life and the life of your child is at risk. Your relationships with other family members, especially your spouse if there is one, can be under great stress and it may be all you can do to hold yourself together. It is okay to be angry and to do your best to channel your anger into getting the best services you can for your child.

You may find your spiritual beliefs challenged and ask yourself "Why me, God?" or similar self-questioning. Others will be happy to tell you answers to this question, such as "God only picks special people for special children" or similar statements meant to reassure you. Often the truth is less clear-cut, and you have simply been caught unaware or random bad luck has just played a hand in your life. You have a right to your anger and frustration and you can acknowledge these feelings whenever you get to it.

Being Sensible

Everyone is told today that it makes good sense to seek a second opinion before having surgery or before investing money or before buying a used car. It should not be any different for you and your child with a disability, whether you are looking for a doctor who knows about cerebral palsy or a school that will accept your child or a church or synagogue congregation that welcomes you and your family.

If you hear of a new treatment or process that might help your child, you should look into it. You should not be rushed into a decision that can take a long time to make. Unless it is emergency surgery, for instance, you could take a year or so to make up your mind whether to subject your child to a new or another surgery.

It took me eighteen months once to get around to setting up a second opinion appointment for a surgical procedure. It can take a while to read everything you can get your hands on about a certain old or new procedure, for instance. You may find talking with other parents of children with disabilities very useful, but it is you who has to make the decisions and live with them. You deserve to take all the time you need to arrive at a resolution.

Keeping Things Private

In the same way that you may not want to share your anger with anyone and instead resolve things privately or through spiritual counsel, you may find other intrusions annoying. Many parents talk about the effects a child with a disability has on family members' privacy because suddenly new persons are brought into the family circle. A series of professionals who examine, give advice and sometimes even judge, or appear to be judgmental, about the actions of the individual family members may be impacting everyone.

One parent stated that the hardest part for her was "having to turn to experts -- it was difficult to have someone tell me what to do with my child," as if you don't know how to do it.

Some aspects of your life are simply no one else's business. If you do not want to discuss something or if you do not want your child's picture taken, it is your right to say "no" or "not right now" or "I'll think about this and get back to you" or "I'd prefer it if we did this another time." I have stated on several occasions that "I just can't handle this right now," and walked away.

Persistence as a Way of Life

Parenting is not easy, but most all parents try to do the best job they can or know how to do. It can be much harder when well-meaning people tell you that there are some goals they think your child will never be able to reach or that you must stand back and accept the fact that your daughter will never walk. A doctor may make a statement like "oh, he doesn't want to walk" or a family member or friend may tell you or imply you are wasting your time if you persist in a particular course of action.

There is nothing wrong with you if you are not willing to give up a certain attitude or course of action you want to take. Your child has an amazing potential for learning and no one knows what event or combination of events will make a difference in your child's life. Also, it is you that will live the consequences of any of your decisions, and not the well-meaning advisors who come and go in our lives.

Giving Up Is Okay as Well

Well-meaning friends and professionals have also told parents that they have not worked hard or long enough with their child with a disability. Statements such as "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference," or "if only you would take the time to train him to use the toilet/feed himself/manage his emotions/cut up his food every time/etc.".

The truth is that it could just as easily make no difference at all, and the instruction may in fact be getting in the way of your just plain enjoying your child. Also, when every activity becomes 'a therapy session,' a lot of pleasure can be lost that would otherwise be shared by you and our child. You are the one who lives with your child, and you are the one who is being asked to do just one more thing. If you cannot do something tonight, or every day, okay. That is your decision.

Sometimes advice givers simply don't understand the disability, or to what degree your child is disabled, or how their well-meaning suggestion sounds pretty stupid or crazy to you. For instance, a family member advised me to hang a track-and-lift system on my ceiling when I complained about the amount of lifting I had to do. While the idea had some merit, there was just no way I was going to undertake the hassle of such a design and installation, let alone how I was going to pay for it! Another parent told me about some of the flak she experienced when the placement for her child's disability 'was not inclusive enough'. "They don't understand how disabled he is," she said.

Often others do not understand how profoundly exhausted a parent may become or how few choices there are.

Setting Limits on Expectations

There are limits to what one person can do. You shouldn't expect yourself to think about your child all the time. And your child with a disability shouldn't expect to be the center of attention all the time or the center of your life all the time. It is often easy to have the child with a disabilities set the schedule and tone for all family life. You have limits and your child has limits; learn to recognize both and give yourself a chance to examine the situation before responding in anger or fatigue or with frustration. You are not SUPERPARENT.

I realized I had fallen into this trap once when I set a rule for myself to visit my son every day after work when he was in a children's rehabilitation unit after major surgery. I started to realize that I was demanding too much of myself, that it was all right for me to occasionally not visit him and I could work late or do something else. I understood that he, and I would, survive anyway.

Getting Annoyed With Your Child

There will be days when you like your child and days when you simply don't but that doesn't mean that you don't love this child or that you are experiencing a problem with the disability. Children with cerebral palsy are just as capable of being ornery as other children, and they should be disciplined as any other children. It is up to you as the parent to discern what is misbehavior and what is disability-related expression by your child. And sometimes you just may blow it!

Having Fun

You are not your child's therapist or teacher. You are Mommy or Daddy. Therapy and educational activities at home are certainly beneficial but you and your child need time to just fool around, tickle, giggle, tell stories and just hang out. These times are one of the most important parts of your child's "education" and the love and social skills learned by them will stand in good stead for the future as they will contribute greatly to the self-esteem of your child - and your own self-esteem as a parent.

I remember getting myself in a real emotional state over not finding an early intervention program for my son when he was three. Another parent kindly intervened and said "don't forget to enjoy him." This advice was very timely, and I let go for a while the frantic phone calls searching for 'a placement'. Having fun with your child with cerebral palsy can be a radical idea when you are surrounded by people telling you what to do or what should be happening next.

Being Unenthusiastic is Part of Life

No one expects you to be 'turned on' all the time to addressing the disability of your child. Sometimes you feel sad or you are worried about money or your other children, or you are sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's disability," that is their problem. No one is excited about work every day. It can be tedious one day and new and interesting the next. The same is true of parenting. There will be days when your child thrills you with joy and days when parenting will seem like the most boring job on earth. You have the right to be "up" sometimes and "down" other days, and living with a child with cerebral palsy may emphasize this aspect of parenting.

Taking Time Off or Having a Life

As a parent you need time to yourself, with your spouse or partner and with other family members, and just time without kids around. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom -- even though they were doing a chore, and even though they didn't talk to anyone but the checkout clerk. There are many parts of your life and each deserves as much attention and nurturing as does your special needs child. At one point I realized that I had no social life and, even though it meant spending money for a respite worker, the time taken to build friendships has probably helped me be a better parent to my child. And even if it has taken time and energy away from my child, I now have 'a life' and can talk about more than my son and his disability.

Being the Expert-In-Charge

You know your child better than anyone else as you have spent the most time and lived the longest with this child with a disability, longer than anyone else. You know what works and what doesn't; you have the big picture and history of your child and can utilize this in any situation. Support personnel come and go but you are the expert with the experience and first-hand knowledge of your child. In ten years of living with my son's disability, he has had six pediatricians and at least fifteen different physical therapists. One year we went through ten different personal care attendants!

In a fast-paced world, the parent of a child with a disability will be one of the constants in their life, and this responsibility often means protecting a child through assertive statements by the parent about how the child should be handled.

As the expert you have the right to be in charge of your child's educational, social and medical and other decisions, at least until your child can do this for him or herself. Professionals do not live the consequences of their decisions, so while you want their opinions, remember that they are only 'informed' opinions and not facts. They shouldn't tell you are wrong, that you will regret it, that you are selfish, or that you are not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision.

And it is not just experts who put this pressure on you; you may experience criticism from unexpected quarters, such as family members or visitors! A dinner guest once criticized me saying I should feed my son first, not me beforehand. I do this because I know how cranky I get when hungry and that I won't have the patience to feed my son. This rudeness reminded me that casual strangers often can misinterpret and misunderstand situations.

Parents are probably the single most important resource that a child with a disability has and often the child's only friend and advocate. This should be respected and if it isn't, it is time to find and surround oneself with supportive people, and professionals, who will respect this.

Keeping One's Dignity

You expect to be neither pitied nor admired but you do expect to be listened to and taken seriously. You expect the truth from doctors, teachers, social workers, and therapists who are there to help you. You deserve to know why the doctor is looking into your child's ear. If the doctor doesn't volunteer the reason, you can ask. From your friends and neighbors and from your family members who love you, you deserve a chance to be someone other than "the parent of the C.P.". You deserve to be talked to as an adult.

Sometimes when you are the parent of a child with a disability, you have to risk being aggressive, or more assertive, in order to obtain the dignity that is your right and your due. One surgeon once told me I "was a bad parent" if I didn't consent right away to a surgical recommendation he was making. You can be sure we never visited him again, and I found another with a better bedside manner!

Most of the suggestions and guidance that you receive from others should be taken for what they are: advice that you will ponder and which you may, or may not, act on. Even the most offensive-seeming suggestions are usually well-intentioned: it is just your call as to what to do with them.

None of these feelings apply just to parents of children with disabilities. All parents have certain common experiences, whether you have one child or ten, or whether your child with a disability is your first and only child, one of many children or the second disabled child in your family. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Over time you will change, just like all adults do and this will change the relationship you will have with your child. Enjoy your individuality and enjoy your child!

Jenifer Simpson is a former policy associate in the national office of UCP in Washington, DC, and the parent of a son, Joshua Chartienitz, who has cerebral palsy.

© United Cerebral Palsy

Sparkle Effect

2011-10-17T00:01:00.000-06:00

I saw this article on the ams vans blog. It made me smile, so I had to share it!

Sarah Cronk, the creator of the Sparkle Effect, a non-profit organization that helps high schools around the world create inclusive cheerleading programs, was awarded the $100,000 as part of VH1′s Do Something Award. The award recognizes teens who promote social change, and Sarah’s organization aims to help teens learn that individuals with disabilities are capable of great things. Just 18-years-old and cheerleader herself, Sarah created and coached the first inclusive cheerleading team that includes both students with disabilities and without disabilities when she was just 15-years-old!

Sarah started an inclusive cheerleading squad—the Spartan Sparkles—at her high school after noticing the struggles of her brother, who has autism, to fit in and find social outlets. Her brother was befriended by the school’s swim team captain, and Sarah saw how this simple act of inclusion changed her brother’s life for the better. A cheerleader herself, she wanted to help other kids with disabilities like her brother’s have a better high school experience and enjoy sports and other extracurricular activities that they had not been able to enjoy.

The Spartan Sparkles cheerleading squad, which performed at sports games along with the regular squad, was a huge success. In 2009, the program reached capacity, and instead of congratulating herself on a job well done, Sarah wanted to expand the program. She then created the Sparkle Effect with the goal of helping other high schools create similar inclusive sports programs for teens with developmental and physical disabilities. The Sparkle Effect provides mentors, support, training, grants for uniforms, as well as a free starter kit for schools and organizations who want to start inclusive sports programs.

Map of Sparkles Cheer Teams Across the USA

“Students at all the schools have reported that cheerleaders who are on the squads who have disabilities are being included outside of the squad,” Sarah said in a video that aired during the VH1 show. “People are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”

The Sparkle Effect now helps over 50,000 students with and without disabilities understand the importance of inclusion. The Do Something Award will help the program expand and reach even more teens, so that a new generation of people will be able to understand that abilities are more important than disabilities.

Three cheers for Sarah!

Sources:
http://www.disabilityscoop.com/2011/08/23/teen-inclusive-cheerleading/13790/
http://www.huffingtonpost.com/sarah-cronk/the-sparkle-effect-when-e_b_929193.html
http://www.dosomething.org/
http://www.thesparkleeffect.org/index.php?pg=18

Qualified

2011-10-16T00:01:00.000-06:00

The Living Proof

2011-10-15T12:01:00.004-06:00

The Living Proof lyrics by Mary J. Blige

It's gonna be a long long journey
It's gonna be an uphill climb
It's gonna be tough
It's gonna be some lonely nights
But I am ready to carry on
I am so glad the worst is over
I can start living now
I feel like I can do anything
And finally I am not afraid to breathe
Anything you said to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many thoughts fight
They just can't make it through
But look at me
I am the living proof
Oh yes I am

Thinking about life's been painful
Yes it was
Took a lot to learn how to smile
So now I am gonna talk to my people about the storm
Oh so glad the worst is over
I can start flying now
My best days are in front of me
I am almost there
Cause now I am free
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof

I know where I am going
Cause I know where I have been
I am gonna feel starts that showing
I am gonna keep rolling
That's the way that I will
Everything you say to me
And everything you do
You can't deny the truth
Cause I am the living proof
So many of those who fight
They just can't make it through
But look at me
I am the living proof

Nothing about my life has been easy
But nothing is gonna keep me down
Cause I know a lot more today
Than I knew yesterday
So I am ready to carry on

Made for Each Other

2011-10-15T00:01:00.001-06:00

Made for Each Other lyrics and song by Emilie Mover

You are exactly one of a kind
There ain't no other I would find
You are eternally on my mind
We're so completely intertwined

And in a perfect world as this
You can wake up every day
And make your way

We dream of all the best stuff
And we can make it happen
We were made for each other
And we sing along with all our favorite songs
And we can make them up
Because we were made for each other
For always

Source

DIY Activities/Games

2011-10-14T00:01:00.007-06:00

Finger Friends from Fave Crafts

Sponge Towers (like Jenga but cheaper and quieter) from Toddler Approved

Milk Jug Ball Catcher from Lakeshore Learning

Adapted Puzzles from Tots -N- Tech

Sensory matching game from Dandee

Indoor Scavenger Hunt printable cards from Kristine Mckay Designs

Emotional Animals charade game from Swetter than Sweets

Marshmallow Popper idea from Come Together Kids

Color Scavenger Hunt from Crafts ~N~ Things for Children

Another great card holder idea from Domestic, But Not Martha

I simply adore this adapted action figure idea from Tots -n- Tech

"Other Kids"

2011-10-13T12:01:00.000-06:00

by Rian of Trach Ties

On our flight to Boston we were seated next to a business woman. She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids. I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement. She and Sid talked business while Maaike and I snacked and snoozed. After a while she started to soften. She wanted to know about Maaike. What was her story? Why were we taking her to Boston? She even shared two of her in-flight purchased sliders with Sid. She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing. With only an hour left on our flight she decided to make her move and become unglued. Through her tears she shared about her younger sister, born with down syndrome. Her sister died just 5 years ago. She loved her sister. She learned so much from her. But, "don't get me wrong," it was hard. It was hard to have a sister who needed her parents so much more. It was hard to not some how feel less loved when you require so much less time. It was just hard.

Next came her plea. "Be careful. Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her. She knew they loved her. She still rides horses competitively all thanks to her parents.

"But still it was hard. Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China. "...and please bless that Mom and Dad will care for us as much as they do for Maaike." Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task. We have tried, but there are days that feel like Sophie's Choice. Last week we missed Kees' only soccer game because Maaike was in surgery. Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game. The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.

To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less. You are not less valued because you need less time. You are not less important because you are healthy. You are loved. You are valued. You are so important to us. I hope you know how special you are.

I Know Different

2011-10-13T00:01:00.001-06:00

by Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you
are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

A Dance For Hailey

2011-10-12T00:01:00.001-06:00

Recently a good friend of Natalie’s opened a dance studio Impact Dance Co.

Meghan and Natalie have been best friends for years. Ever since Hailey was born Meghan wanted to choreograph a dance and dedicate it to Hailey.

In June, Meghan had applied for a residency program, unfortunately she was denied. I thought I would post her good intentions anyway. As a way of thanking Meghan for her efforts and hoping that someone who reads this may be able to support such a beautiful effort.

Thank you to Miss Chloe for the cutest ballet feet I've ever seen :)

IMPACT Dance company is a contemporary based dance company that strives for captivating audiences through emotion. The sole purpose of IMPACT is to initiate a change by bringing dance to the forefront and raising awareness. We want to raise awareness by magnifying what is not stereotypically accepted or touched upon as frequently as it should be. IMPACT Dance company wants to make a difference in our society by utilizing our art as a statement to educate and inspire.

What is your overall mission or dance philosophy?
Impact Dance company wants to truly make a difference by utilizing dance in every possible way we can. A few ideas the company has is to host motivational seminars and dance classes for elementary, middle and high school students, put on benefit performances, support local charities, and create pieces dedicated or inspired by certain topics, causes or diseases.

How would this program affect your company? What would this residency mean to you?
This program would give the company the opportunity to truly experience a life changing event personally, mentally and physically. This residency will give us the opportunity to fully commit and focus on the creation of a new piece. Personally this residency means I will finally have the freedom to create a piece that I have been wanting to create for the past five years. This piece is very personal and I did not want to commit to it unless I knew I could focus on it whole heartily and could train my dancers mentally and emotionally for the subject.

This piece has been a dream of mine since the birth of one of my closest friend’s daughter, Hailey. Due to complications at birth, Hailey was diagnosed with Cerebral Palsy. There are many emotions surrounding this topic from the outside point of view, but I want to travel deeper and showcase the story of Hailey, her family, and her parents. I want to live the emotional roller coaster their journey has brought them to, celebrate their triumphs, their failures, and their happiness all through what I know best, dance. Their story is truly inspirational and it needs to be told.

How long of a Residency would you need and why?
We would need four weeks to accomplish the tasks I am setting up with this piece. For the first couple of rehearsals I would invite Hailey and her family to come interact with the dancers. First, I would ask the parents to prepare what they would want to share about their journey. Explaining their day to day life, hospital visits, school trips and activities they do as a family. Secondly I would arrange an informative meeting where the dancers can ask in depth questions regarding emotions so they can find a way to connect while they begin movement with the piece. Lastly I want to have the opportunity to watch Hailey. By teaching her dance moves, and observing her and her mechanisms we would be using the way she crawls, sits, smiles, laughs, and plays to inspire movement we would incorporate into the piece.

How would you utilize the studio space?
The studio space sole purpose would be to create and establish the choreography inspired by Hailey. The first week will be dedicated to the process of meeting the family. The second week of rehearsal we will incorporate movement from Hailey, finding a medium between what our bodies can accomplish while showcasing what we learned or were inspired by. The last two weeks would be used to finalize choreography and finish the piece.

Do you have access to discounted rehearsal space elsewhere?
Currently we do have access to discounted rehearsal space. However the only setback is that the space is very small. I would be willing to utilize the space to save money, but I know myself and my dancers would love to be able to use a bigger space for the last week of the residency.

How do you plan to participate in the Community event? How does this connect with your company mission or experience?
For the community event Impact would like to host a movement workshop for children with Cerebral Palsy and other forms of debilitating sicknesses followed by a performance of the piece created with the residency. The community event would convey Impact Dance company’s mission statement perfectly. This would give us an opportunity to reach out and connect to the Cerebral Palsy community, raise awareness about Cerebral Palsy and perform with the intent to inspire and show support to the families of not just Cerebral Palsy children but also the families that have children with other debilitating sicknesses such as Multiple Sclerosis and cancer.
Meghan thank you from the bottom of my heart for being passionate about Hailey’s Dance. Good luck with your dance company and to all of your future endeavers.

Smart Adaptations

2011-10-11T00:01:00.000-06:00

DIY roll-up crayons
Melt crayons and pour into empty glue sticks
Easier to hold and won't break!
Great idea from Infarrantly Creative

Foam Page Fluffers
to make page-turning easier!
Genius idea from OATC

Milk Jug Marker Holder
Another smart idea
from OATC

Adapted Glue Stick
Could also be used for writing utensils
Idea from Special Classroom

Sweet Awareness

2011-10-10T11:40:00.002-06:00

October is awareness month for a lot of things. For many moms, every day is awareness day. Here are a few things I've seen to help raise awareness.

I saw this on Parenting Special Needs' facebook page.

October is disability awareness month. Support our initiative to educate our communities about acceptance of people with Different Disabilities & Abilities.

Your Assignment:
♥ Start a Conversation ♥ Read a book to a group of children that emphasizes difference and fosters acceptance ♥ Share a personal story ♥ Pass on information about a disability ♥ Display our FREE poster ♥ Acceptance begins with a Smile : )

Rett Syndrome Awareness

from Brooklyn Ashleigh Butler...

Mitochondrial Disease Awareness

A touching post from Life With Jack...

A post about Mitochondrial Disease

and other awareness activities

by Mama Mia...

Spina Bifida Awareness

Faces of Spina Bifida

Daily photos & stories on the blog Beyond Measure....

Down syndrome Awareness

31 for 21 from Unringing the Bell

Daily posts from lots of blogs!

Grab This Button

Sweet message from Boston Clark Butler's blog

Dwarfism Awareness

Let us know if we're missing anything. Help spread awareness!

Full Heart

2011-10-10T00:01:00.000-06:00

I was asked to write a letter to the donors at Now I Can, explaining our experience.

To Whom it May Concern:

When we stumbled across Now I Can, it felt right. I frequently follow my feelings -- but this feeling required more money than I usually spend, so I did my research. And our decision was made. We weren't sure how, but we were getting our Samantha to Utah.

After we decided, we scheduled her session, and miracles began to happen. The finances appeared little by little. A place to stay opened up for us (we are from California). And everything just fell into place.

Upon arriving and beginning therapy at Now I Can, those tiny miracles continued. Samantha is 5 years old with extremely tight muscles (high muscle tone). In just 3 weeks, I've seen more improvement in her body and body control than I've seen in over a year! She stands with increased stability now, flat on her feet a majority of the time. She stands straight up instead of with her back hunched over. And she extends her arms out further than she once could.

Since being here, I've seen many physical changes in her, but I also see a proverbial door opening up for her as she gains control and learns to master her body. What an incredible gift of increased quality of life. With each stretch and movement here, her future opportunities are increasing. She gains better knowledge of the world around her as she gains the proper mobility that enables her to explore it. Again, what a gift.

Please take it most sincerely when I say Thank You. Thank you for supporting Now I Can -- a seemingly small facility that brings about incredible change.

Sincerely,
Jeanette G.

Keep the Faith

2011-10-09T00:01:00.000-06:00

(Images linked to sources)

Queen

2011-10-08T15:59:00.005-06:00

I was going to use this as a 'Make Your Day Monday' post, but I couldn't keep it to myself that long!

She didn't need a crown to be a queen, but I'm sure it felt nice! :)

video platform video management video solutions video player

Smallest Wingless

2011-10-08T00:01:00.000-06:00

This week, I've been overwhelmed with gratitude for my Samantha. I just can't imagine my life without her...with all her imperfections, she is absolutely perfect to me. The struggles and pain that we have experienced (and will continue to experience) is refining my life to help me become who I need to be ~ and her light influences reaches out further than to just me. You know that feeling, like your heart may burst because you love that little child so much? I have felt that often over the past couple weeks.

And then, my thoughts have turned to those who were only touched by a moment of life with their child. I have met many who didn't have the chance to experience very much mortal life with their babies. You may be one of those....or will be. My heart aches for you. As I type, I cry thinking of the sadness you may feel. And my gratitude for each moment I have with Samantha increases. What I have learned from those who have had to face the heartache of losing a child has been a deeper understanding of the reality that every. moment. matters.

Craig Cardiff heard about Now I Lay Me Down to Sleep (follow the link for more information) and was inspired to write this song. Whether you lose a child at birth, a day, month, or years later, I feel like this song rings true to the heart. (Grab a tissue.)

dear one we've been waiting for you.
thrilled, beside ourselves you've arrived.
white coats came in heads held low.
talked for a bit, shuffled outside.

we closed the curtains, held each other and cried.
said hello at the same time we said goodbye.

smallest and wingless
leaving as soon as you arrived.
sadness is just love wasted
with no little heart to place it inside.

we closed the curtains held each other and cried.
said hello at the same time we said goodbye

Yep! More!

2011-10-07T22:37:00.005-06:00

Halloween is coming quick! Here are even more adorable wheelchair costume ideas! (Images linked).

If you missed our previous adaptive Halloween costume ideas, check them out here, here, and here.

Need even more Halloween/fall ideas? Check out this pinterest board! You'll be glad you did :)

What I Wish

2011-10-06T00:01:00.001-06:00

Guest post by Shannan of The Hoffman Family. Thank you for sharing, Shannan!

When Kate was about 6 months old, about two months after we initially learned of her challenges we would face, I remember taking her to an appointment at the Opthamology department at Primary Childrens Hospital. We were waiting in the waiting room to go back for our appointment. There was a family there, a Native American family that had driven about 5 hours up to the hospital for an appointment with their severely disabled daughter. She was probably about 8 years old, in a wheel chair, it appeared she was unable to communicate, had impacted vision, had her feeding tube pump hooked up, and seemed to be unable to move any of the parts of her body. I remember holding Kate and wondering about what our future would hold, would it be similar to this family? I saw all of the stares from others in the waiting room. As the room cleared out, and people were called back for their appointments, I heard the father mutter to his wife “They should just take a picture, it would last longer.” He was obviously upset by the stares and the whispers about his daughter.

Fast forward two and a half years later. As time has gone by and Kate has grown, it is now more evident than ever that something is different about her. Last night we went to dinner. We haven’t used Kate’s wheelchair much outside of church, since she still fits well in her umbrella stroller. We took her in the stroller. We looked almost comical, Ryan on his crutches, me struggling to push Kate, carry Eli in his car seat, and Maren struggling to get in the restaurant and sit down at a table. About halfway through dinner Kate started to fuss and Ryan had to get her out of the stroller and hold her while he ate. I couldn’t help but notice all of the stares from people in the diner, some of them curious, some of them sympathetic, some of them uncomfortable. It’s something I am used to now. It’s not uncommon to walk around with her in her wheelchair when we do use it and see people either avoid eye contact or trying to quiet their children who ask what’s wrong.

It doesn’t upset me like it did at first. If anything, it has made me more thankful for those who aren’t afraid of Kate. There are a few places that I feel very safe taking Kate. One is our ward. They are used to seeing Kate in her wheelchair and many of them come up and talk to her, touch her, get right down at her eye level and are very kind to her. Another is with our families. Kate’s cousins are used to her, they love her, they love to sit with her and make her smile. And the last place is probably at Primary Childrens. When you walk down the hall there, the doctors see her and they always smile and address her as we walk by.

It makes me thankful for acts of kindness. There is a sweet couple in our ward who have a granddaughter with disabilities like Kate’s. They always ask if they can walk her around the hall in her wheelchair when she gets fussy. Their faces light up when they see her. It’s not forced, it’s genuine love that they have for her. I appreciate that so much. It also makes me thankful for kind mothers who seem to know what to say when their kids ask what is wrong with Kate. We were at a party a few weeks ago and a friend told her daughter that Kate was extra special so her daughter knew to touch her and talk to her with extra kindness. I watched this little girl sit by Kate and stroke her hair and it just made my heart melt. This child could see the person that was inside of this little body.

What I wish is that others could all see in this precious child what we seen in her. There is this amazing little spirit trapped inside a body that won’t function. We get glimpses of this little personality every day. I have no doubt of the perfect little person that is in there. I have been thinking about what I wish could happen in our lives. I wish everyone felt comfortable enough to love Kate as much as we do. I wish everyone would feel okay touching her, talking to her, feeling her spirit. I wish people wouldn’t have pity on us, because we certainly don’t have pity for ourselves. We know we are the lucky one who gets this little perfect spirit in our home. I wish that all people could feel comfortable asking me questions instead of shying away or being uncomfortable. I know that is something that probably won’t happen all the time, but it’s my goal to help others recognize what a truly beautiful person my daughter is, inside and out. I like to sing the song “When you’re smiling the whole world smiles with you” to Kate because it’s true, when she smiles, I really think it makes people happy. She is such a blessing to us.

AAC in Use

2011-10-05T00:01:00.001-06:00

We are working on implementing a communication system with my daughter and I came across this video of children using all different methods of communication. I love how it shows the children participating in everyday activities with their talkers commonplace. It makes it feel less intimidating to me as we venture down the path of looking at AAC talking devices.

Awareness

2011-10-04T12:01:00.000-06:00

(Inside Text..."Hope Your Holidays Are Special"

Nobody likes to be talked down to or treated like they are invisible, but it happens everyday
to people who have disabilities or use wheelchairs to get around. It is not typically done on purpose, but is often because of the lack of knowledge or lack of interaction with someone who has a disability. More often than not when you first meet a person who has an obvious disability, maybe they are in a wheelchair, or maybe they are blind or have vision impairments. You become a bit uncomfortable, you are not sure what to say. Sometimes pity, fear of the unknown, general awkwardness and a lack of understanding makes you shy away from being cordial.
One of the ways to get past the social awkwardness is to know how to act or what to do in an unfamiliar situation, so educating yourself and others about disability is very important. I think it should be started at a very young age. I wholeheartedly believe in inclusion.
Inclusion is part of a much larger picture than just placement in the regular class within school. It is being included in life and by using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation. It is my hope to see people like my beautiful granddaughter who lives with Cerebral Palsy be more accepted and understood by society. I think I speak for most people who are touched by someone with a disability, when we see things in stores, such as Barbie in a wheelchair, or the occasional book that explains to children that being a little different is o.k. that they are people who are accepted by others and they are people just like you, who have feelings just like you, and they have a purpose in life, just like you do. That is why I decided to design a couple of Christmas cards that show children enjoying themselves at Christmas time, opening gifts and helping to decorate the Christmas tree. It is my way of raising awareness and acceptance. If I can get these cards out for Christmas, people will send them across the miles to their family and loved ones embracing and accepting disabilities and soon, we will be spreading awareness all around the world!

If you are interested in these cards, please contact harrold.janet@gmail.com
Orders are being taken through October, cards printed on November 1st and in your home by Thanksgiving.

Discipline

2011-10-04T00:01:00.000-06:00

Chloe has gone through a few phases that required some discipline... I had absolutely no idea how to go about that discipline, but I knew it was needed. We were referred to a neruopsychologist and she recommended 1-2-3 Magic by Thomas W. Phelan, PhD. I absolutely loved it. The principles are simple, easy to remember and relatively easy to implement.

I've also read Love & Logic for Kids With Special Needs by David Funk. This didn't resonate as much for me, at least in this stage of Chloe's life, but I wanted to mention it because I adore Love & Logic principles.

For more food for thought on discipline, go to 10 Secrets to Implementing Timeouts at Home by Aupair.org.

I've also started to compile a list of all the special needs books that have been recommended to me on this pin board. Check it out! And please leave a comment if you have any book recommendations, regarding discipline or any other special needs subjects!

A Better Person

2011-10-03T00:01:00.000-06:00

A Better Person

If you close your eyes you'll never see,
just how much she means to me.

All I ask from this day on, is to stand beside her and cheer her on.

She'll bring you places that you've never been,
and show you love from deep within.

She'll melt your heart a little more each day,
until it seems her disability has faded away.

But it's still there, i'll tell no lies.
It sometimes appears, to be in disguise.

You no longer see through rose colored glasses.
As this vision you once had, slowly passes.

The child you once thought of as frail and weak,
instead has made you implore defeat.

Her health sometimes may seem uncertain.
Yet through it all, she has made you a better person.

© Copyright 2011 by Janet Harrold

Dear God

2011-10-02T11:30:00.003-06:00

I love this poem I found via Nathan's Blog of Exceptional Family TV.

Dear God,

I am just a little boy
I don't know how to pray
But please tell me, Lord
... Why did you make me this way
He explained,

I gave you no sight
So others could see
That My glory is planted
In the smallest of seeds

I gave you no voice
So others you could teach
That even in silence
I can hear you speak

I gave you a life that others
Would not wish to have
So they would be grateful
Instead of boastful and proud

The body of a child
The purpose of a man
You were lovingly created
To fulfill the Master's plan

So close your eyes, my child
I will give you dreams
For someday you will fly
And you will not need wings

Lisa J. Brown
Kentucky