Jan 31, 2011

One Little Heartbeat at a Time

kidz

I love this song. Sometimes we forget as parents (not just mothers) how much a hug means, how important what we do everyday is. Never ever doubt if you are changing the world. We are, one little heartbeat at a time.




You're up all night with a screaming baby
You run all day at the speed of life
And every day you feel a little bit less
Like the beautiful woman you are
So you fall into bed when you run out of hours
And you wonder if anything worth doing got done


Oh, maybe you just don't know
Or maybe you've forgotten
You, you are changing the world
One little heartbeat at a time
Making history with every touch and every smile
Oh, you, you may not see it now
But I believe that time will tell
How you, you are changing the world
One little heartbeat at a time


With every "I know you can do it"
Every tear that you kiss away
So many little things that seem to go unnoticed
They're just like the drops of rain over time
They become a river


And you, you are changing the world
One little heartbeat at a time
Making history with every touch and every smile
Oh, you, you may not see it now
But I believe that time will tell
How you, you are changing the world
One little heartbeat at a time


You're beautiful
You're beautiful
How you're changing the world
You're changing the world
You, you are changing the world
One little heartbeat at a time

Making history with every touch and every smile
Oh, you, you may not see it now
But I believe that time will tell
How you, you are changing the world
Oh, I believe that you
You are changing the world
One little heartbeat
At a time

Jan 30, 2011

An Opportunity to Serve



Special Olympics Alaska needs help to complete 2011 scarf project
A small army of people who crochet and knit is needed to make scarves for Special Olympic athletes and volunteers.
Only 40 scarves have been collected, and the organization needs many more for the 350 people expected to participate in the local Winter Games from March 11 to March 13.
“Everyone who crochets or knits these scarves have just a tremendous story behind it,” said Special Olympics Alaska President and CEO Jim Balamaci. “Some are coming from all over the country, because they like Alaska or they have a sibling or relative or friend in Alaska, and some are doing it to give back.”
Information on how you can give a scarf and size and yarn color guidelines are available at http://www.specialolympicsalaska.org/.

God Has No Junk Yard

kidz

Ask God to redeem all of your experiences. God uses everything, even our family's faults, to shape us.


God has no junk yard. Everything we turn over to him becomes 100 percent recyclable, redeemable, and useful in our lives and the lives of others.

~Linda Riley

Jan 29, 2011

Change

kidz

I haven't been able to stop wondering what I would change if I could ever since I read this post by Renee of Exceptional Family TV. I've pondered this a great deal.... If I could change Chloe or anything about her circumstances, would I?

Would you?

Here is my answer -- in the lyrics of a song (Nothing I Would Change by Johanna Stahley).




I wanna change the place where I live
I wanna make this old house like new
I wanna change my job,
my car and my shoes
But there’s nothing
I would change about you


I wanna change the color of my hair
I wanna change into things I never wear
Something changed in me
the moment that I knew
that there’s nothing
I would change about you

The moment the light came down
across the sky of gray
I knew that you would be just right
And I wouldn’t have you any other way

I wanna change the day to night
But changing you just wouldn’t be right
I wanna fade the light
and make love by the moon
But there’s nothing
I would change about you

I wanna change all
the times that I lied
I wanna do more than
just gettin’ by, gettin’ by
If I could change the world
baby, that’s what I’d do
But there’s nothing
I would change about you

The moment the light came down
Across the sky of gray
I knew that you would be just right
And I wouldn’t have you any other way

I wanna change the winter to spring
But in you my love
I wouldn’t change a thing
Something changed in me
the moment that I knew
That the biggest change in me is you

Well there’s nothing
I would change about you....

Jan 28, 2011

25 Things That Make Special Needs Parenting Easier

Guest post by Ellen of Love That Max. (Thanks, Ellen!)

1. Your child's smile.

2. Being unafraid to say "no." As in, "No, twice a week of speech therapy is not enough" and "No, I don't think my child can handle that" and "No, I am not Angelina Jolie, though I do bear a striking resemblance to her, I know."

3. Finding doctors who are good but also kind, supportive and non-jerk-like.

4. Trusting your gut.

5. Accepting that you are not a crappy parent if you don't do every single thing the therapists ask you to.

6. The kindness of strangers (but not the pity).


7. Peach Snapple. Or Diet Coke. Or the occasional glass of wine. Or whatever powers you through.

8. Silly time that cracks you both up and helps you remember although your child may have disabilities, he is not at all fun impaired.

9. Knowing that you are not alone. Blog, comment, post on a message board, join an e-loop, start a support group. There's major comfort in connecting.


10. Having at least one babysitter both you and your child are truly comfortable with.


11. Having a good cry as needed, then moving right along.

12. Takeout. Diapers and prescriptions by mail. Not ironing. Whatever you can do to have fewer to-dos.


13. Roping in all the therapists on a conference call at least once a year.

14. Believing—truly believing—that there is something wrong with the people who stare at your child, not your child. That mindshift alone will save you many hours of grief.

15. A looseleaf binder with Important Papers organized in whatever way makes sense to you. Yes, you will need a hole puncher. Bonus: They're good for getting out frustrations.

16. Time for yourself, out of the house. Repeat after me: This is not a luxury—it's a necessity.

17. Going with the flow. So your child won't leave home without his stack of 20 purple paper cups? OK, then! If it makes him comfortable and it won't get you arrested, do it.

18. Not looking too far into the future when your child is very young.

19. The passage of time. Few things give you better perspective.

20. Having a handy catchphrase you can use when people ask questions that unsettle you. Person: "Is he talking yet?" You: "Yes, in his own way!"

21. Making playdates with other kids who have special needs. Good for the kids, good for you.

22. Asking other parents and experts advice for resources and things—the adapted chair for the dining room table, shoes, apps, whatever—that will improve the quality of your child's life, and therefore yours as well. Also, asking therapists to adapt things in your life (like the phone) so your child can better use them.

23. Your child's kiss.

24. Hope.

25. You tell me.

Jan 27, 2011

Possibility

kidz



"There is possibility in every difficulty."

~Albert Einstein

Different

kidz

Different
by Vincen Tabatha

How are we so “different“?
If “different” is just a thing.
If we all have certain features,
What does “different” bring?

People filled with hatred,
Can’t possibly see,
That there’s not really “differences”
Between you and me.

Looks can’t show “difference”,
If they’re just there to be seen.
If you don’t look like someone else,
Why are they so mean?

If being “different” is what is wrong,
I’d rather not be right.
And I’d want to finish living,
Doing the “different” fight.


Jan 26, 2011

A Special Needs Child

kidz


Their eyes are bright and vibrant and full of unspoken promises and of dreams yet to be revealed. In the eyes of these children I see a wealth of possibilities. I spy promises unspoken that are left to my imagination. Their tomorrows are something I am humbled by. Their realities are yet to be realized and I am left to ponder their delicate footprint that has yet to be revealed. To me, they are a wonderment that has been woven into an unbreakable web of pure love. These children leave us with the amazing gifts of a Heavenly Father that chooses us to share in the nurturing of one of His true angels. I am humbled by His choosing and wary of my impact. I walk softly, at times holding my breath. I do not want to fail these angels, these gifts. I am aware, for reasons, that I have yet to understand that I have been lent a beautiful key that open's a door to God's amazing love. This love is pure and kind and comforting. It does not discriminate or curse anyone who comes within its sanctified path. We are given these seemingly short moments in time to share in one of God's greatest gifts, the life of a Special Needs Child. If you let them in, they will change you in your core. These beautiful children will make you realize how wonderful our lives are and how much fuller our spirits are for having been lent these miracles. These children make us more complete human beings by simply allowing them to touch our hearts. You will have the unfortunate experience of dark days and tremendous moments of grief and misunderstanding. But in the end, when all is said and done, you… we… will be more complete, more whole, more loved, more patient and kinder because we were chosen to meet, touch, hold, hug, adopt, parent, comfort, nurture and most of love a "Special Needs Child". How could we ask for anything more?

By: Julie J. Hunter

Jan 25, 2011

Take a Day Off

kidz

"The only way we can
be there for our children

is to be there for ourselves."

~Anonymous

Jan 24, 2011

A Little IEP Humor

kidz

Top Ten Signs...
That You're Going to Have a Bad IEP Meeting
By Colleen F. Tomko


10. The IEP invitation lists "drive-thru" hours.
9. When you get to the meeting, the staff want to know what you are doing there.
8. They give you complimentary white flags and tissues.
7. Your child's student ID # is 666.
6. They try to convince you that the attending speech therapist really is the janitor's identical twin.
5. You find yourself explaining that...the regs say they can use IU's for related services, not I-O-U's.
4. The special ed coordinator says 'Have we got a place for your kid".
3. They think "inclusion" is some type of venereal disease.
2. The staff is bumming because their label maker burned out.
1. You over hear the staff talking about the Least "Resisted" Environment.




I Do Not Like These IEPs
~Author Unknown

I do not like these IEPs
I do not like them, Jeeze Louise
We test, we check
We plan, we meet
But nothing ever seems complete.
Would you, could you
Like the form?

I do not like the form I see
Not page 1, not 2, not 3
Another change
A brand new box
I think we all
Have lost our rocks.

Could you all meet here or there?
We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in the hall
There seems to be no space at all.
Would you, could you meet again?

I cannot meet again next week
No lunch no prep
Please hear me speak.
No, not at dusk. No, not at dawn
At 4 pm I should be gone.

Could you hear while all speak out?
Would you write the words they spout?
I could not hear, I would not write
This does not need to be a fight.
Sign here, date there,
Mark this, check that
Beware the students ad-vo-cat(e).

You do not like them
So you say
Try again! Try again!
And you may.
If you will let me be,
I will try again
You will see.

Say!

I almost like these IEPs
I think I'll write 6003.
And I will practice day and night
Until they say
"You got it right!"

Jan 23, 2011

Every Detail Worked Into Something Good

kidz


"The moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. he does our praying in and for us, making prayer out of wordless sighs, our aching groans.


He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good."

Romans 8:25-28, The Message

Jan 20, 2011

Optimism

kidz




"Optimism is the faith that leads to achievement.
Nothing can be done without hope and confidence."


~Helen Keller


Jan 17, 2011

Signs

kidz


By Melody of The Brave Girls Club.
Retrieved here.

After a dear friend telling me about a hurtful experience she’d had this week…..I began thinking again about a story I have told a few times….a story that my children will tell to their children, and maybe even beyond that… because it was such a learning experience in our family….maybe even a turning point…it’s a story that I think about often because we were the main characters in it 3 or 4 years ago, and even though it was something that lasted less than 15 minutes….it changed all of us….and now I see others differently, especially when it seems that they might be main characters in the same story…or one a lot like it. I used to be too embarrassed to tell this story….but I am not anymore. This is a human story that everyone needs to hear, I truly believe this…I hope you will stay with it, it’s kinda long.

As we move along…I want you to think about some of the big signs with big messages that I bet you wish you could wear around your neck sometimes so that people would be more gentle….or even that you could put around the neck of someone you love….so that you didn’t have to go into a big long story to defend yourself or someone else….so that people would just stop judging and and just be kind.

First, if you don’t know my history because you are brand new to Brave Girls Club…welcome welcome welcome! I need to start this story by giving you a little bit of background….. you see, my husband had an accident in 2004 that injured the frontal lobe of his brain……it has taken 6 years to get him back……but in the middle there, between 2004 and now…lots and lots of stuff happened. He was essentially out of it…but not just that….he changed to someone else, we lost him. His personality changed completely, he could not work, he was angry and depressed and could not cope with human beings. He did not feel love or affection, really he only felt anger…rage…and he was suicidal most of the time. He did not remember a lot of things. He could not take care of our family or even himself, really……..(and I want to mention again that through lots of miracles, he is 100% recovered now…we are so thankful….he is even BETTER than he was before his accident)

But……during that time…..he would have these confusing and amazing glitches of time when he would be totally normal. It was bittersweet. They would last for an hour sometimes, and sometimes for days…or even weeks…then he would sink back down into that horrible place. When he was sick, I protected him fiercely. I didn’t want anyone to see him like that…I had faith that someday he would recover….but man oh man it was lonely…I wished every single day that I could just walk around with a sign like this….

….because on the outside…I looked like I had EVERYTHING GOING FOR ME…I looked like I might just have a perfect life….but I was hiding a very painful secret….
Well…a lot of other things happened too………you can imagine what might happen over the years while we have a 7 acre farm, a pretty big international business that we own with lots of employees…..a life that HE managed before his accident, while he just let me do the fun and creative stuff….now we had lots of medical bills…lots of sorrow and lots of distractions……we also had LOTS of kids…..and no one competent managing the business…
Well…after a few years, I couldn’t hold it all together…our business was suffering for all of the reasons listed above and a few more reasons on top of that……..and we discovered that we were really SINKING. Well……one day when he was partly lucid….he was THERE…he was coherent….I told him the condition of our life.
He kind of panicked and he went straight to work figuring out what he could do. It was insanely heartbreaking when he would “wake up” after weeks or months and I had to tell him how much things were deteriorating financially, etc. It was very hard. But when he could, he did what he could….before his mental illness sucked him back into the prison it kept him in most of the time.
He called a sign place and had a huge sign brought out to our house…the kind that you can put letters on, and it was electric and lit up…….He put it by the road in one of our horse fields……then he drove our Suburban….both of our trucks….my classic Thunderbird that he got me for my birthday a few years earlier…..our tractor…all of our tractor implements…the boat that I worked 10 years to get for him (and that caused his brain injury, incidentally)……….and he lined everything up along the fence and he put a price tag on every single thing. Then, he put the letters on that big huge sign and plugged it in.
You have to understand that we had worked for MANY years for those things. We started a business in our twenties and we sacrificed everything we had for all of those years to make it work. We owned almost all of it outright…….but, when I told him that the business was struggling….this is what he did….
Sooooo…..there it was….all in a row……all of our stuff…..out in our field.
All of the neighbors driving by…our friends…the community…..people who knew us most of our lives and people who knew nothing about us…..we were just the young family who lived in that beautiful little farm house on Beacon Light road with the perfect lawn….or what USED to be.
You see, in addition…for months….our once beautifully manicured yard started to be filled with weeds that were now several feet high. I just couldn’t keep it up. The lawn was a nightmare. Everything was just falling apart all around me and my heart was broken over my husband, too. It was humiliating and exhausting and horrible, really.

Well, the sign was not up in the field for more than a few hours…….when my husband’s phone rang….it was someone who saw all the stuff and my husband’s phone number on the big huge sign. We were sitting out in the yard while he was still coherent and he was feeling devastated about the condition of our lawn…..I was apologizing that I just couldn’t do all of it………..he was so heartbroken at his limitations and that he had left me to try to handle our life alone……we were trying to make a plan…..
He answered his phone…I saw that he was just listening…I could hear that the person’s voice was getting louder and louder and louder………..my husband just listened. He turned his back to me a little so I wouldn’t hear. But I could hear it….It seemed to go on and on and on……..
These were the things I could hear on the other end of the phonecall….
“You are bringing down the value of my property with that ugly sign!”
“What are you doing?”
“That is the most obnoxious sign, do you have a permit to have that out there?”
“Are you starting a used car lot?”
“You have got to get all of that moved and out of here or I am calling the authorities”
I sat there, mortified, embarrassed, humiliated, mad, sad, devastated. I was certain that this would snap my husband back into his dark hellish place.
But, when the man was done ranting, my husband waited a second and then very calmly said something that I will never, ever forget…….
“Sir,” he said, “There was a time in this country, in this community…when if you drove past your neighbor’s house and saw every single thing they own was for sale in front of their house…and that their lawn had not been mowed for weeks….that you would stop and say….WHAT IS GOING ON, SOMETHING MUST BE TERRIBLY WRONG, WHAT CAN I DO TO HELP YOU?”
The man was silent…..and then my husband went on to tell him a few details about what was going on with our family….
The man waited a moment and then his tone changed…..he apologized….I mean, really apologized and then said…
“I am going to call all of my friends and see if any of them need any of this stuff….”
***************************************
I wish with everything in me that we could have put a sign up on that big stupid lit up billboard in our field that said OUR LIFE IS FALLING APART…. but all that we really could put up is a sign with the price of everything that we owned that was worth any money…….
WHAT IF we could all wear a sign that said what WE REALLY MEANT? What if we could go straight past the small talk……..or the masks…….and we could actually go straight to the heart of the matter…….what if our friends and family wore signs like this?

…we would treat each other differently.
I think we should just try to imagine it………that when a friend is quiet…or not showing up to stuff she usually shows up to….or acting a little “off”….or a family member is wearing pajamas to the grocery store for weeks on end……or not answering the phone…..or the lawn is not mowed…..

whatever it is……….
IT IS A SIGN. It is not a sign that can be read in words and letters, but it is a sign that someone needs to be treated gently…that they need help….most of all, that they need love, understanding…and that they DEFINITELY DO NOT need to be judged.
Every time I think of this story….I want to be better…I want to do better, I don’t want any silent signs to go unread before my eyes or my heart…..I don’t want to make up my own answers to what must be going on…I don’t want to assume………..

Let’s be gentle with each other.
Let’s read each other’s signs.

Jan 15, 2011

God's Plan

kidz



From the moment you took your first breath,
I could tell that you had a special job to do
I could tell by the crease in your hand
And your eyes, oh they told a story too
I could see the look on their faces
They thought something was wrong
They didn't see what I saw before me
A perfect babe had been born

So don't tell me what you think he won't do
You gotta open your eyes to a better world
Give him a chance to do like the others
Give him some time to move right along
I'm not saying this job will be easy
You gotta understand
I think he was sent here to teach us a lesson
Don't mess with God's plan
He is part of the plan

Now you're growing up much too quickly
Trying hard to keep the pace, I know it's true
So your steps are a little slower
And your words, oh they take their time too
You were born with a love that's so pure
One touch and it shows
You are an angel sent here from heaven
And I'm sure that you know

Since the day you came into my life
I found the meaning of believing
And i know that miracles are real
Every
time that you smile
I know the meaning of belief
You gotta open your eyes to a better world

So don't tell me what you think he won't do
You gotta open your eyes to a better world
Give him a chance to do like the others
Give him some time to move right along
I'm not saying this job will be easy
You gotta understand
I think he was sent here to teach us a lesson
Don't mess with God's plan
He is part of the plan

Jan 13, 2011

Make No Mistake

kidz



Disabled people might look weak,

but make no mistake.
Disabled people are the most strong,
resilient fighters you will ever come to know!


~Richard Bernstein

Jan 12, 2011

Jan 11, 2011

Avoid the Trap of Perfectionism

kidz

An excerpt from the book, Don't Sweat the Small Stuff by Richard Carlson, PhD.


"I've yet to meet an absolute perfectionist whose life was filled with inner peace. The need for perfection and the desire for inner tranquility conflict with each other. Whenever we are attached to having something a certain way, better than it already is, we are, almost by definition, engaged in a losing battle. Rather than being content and grateful for what we have, we are focused on what's wrong with something and our need to fix it. When we are zeroed in on what's wrong, it implies that we are dissatisfied, discontent.

"Whether it's related to ourselves - a disorganized closet, a scratch on the car, an imperfect accomplishment, a few pounds we would like to lose - or someone else's "imperfections" - the way someone looks, behaves, our lives their life - the very act of focusing on imperfection pulls us away from our goal of being kind and gentle. This strategy has nothing to do with ceasing, to do your very best but with being overly attached and focused on what's wrong with life. It's about realizing that while there's always a better way to do something, this doesn't mean that you can't enjoy and appreciate the way things already are.


"The solution here is to catch yourself when you fall into your habit of insisting that things should be other than they are. Gently remind yourself that life is okay the way it is, right now. In the absence of your judgment, everything would be fine. As you begin to eliminate your need for perfection in all areas of your life, you'll begin to discover the perfection in life itself."

Jan 10, 2011

Its Okay to Put on My Mask First

kidz

Raising a family with special needs
By Natalie BaileyThursday
Retrieved from this site.

"Breathe!"

"Faith or fear?"

"The universe is abundant and full of resources."


These words of encouragement, written in pen and marker on strips of construction paper, are taped on the cupboards and doors of Kathy Lavin's Chicago home-a casual, inspirational complement to her paintings that hang more permanently on the walls.


Painting is a hobby.


Life is a mystery.


And there's a divine timing to it all, Lavin says.


For Lavin, 43, this belief is as much a part of her life as the supposed coincidences that have shaped it.

It hasn't always been easy for Kathy to embrace the divine timing and mystery of life, though. It's a daily practice, she says.

As her children filter into the house and drop their things by the front door, Michael asks, "What's been happening?" Kathy replies, "Oh we've just been hanging out; Emily's doing her thing. You know."

Emily, bright and curious like any 13-year-old, spends her time after school captivated by a television show and a snack. Unlike other teenagers, Emily struggles to communicate-an obstacle that proves frustrating and heartbreaking for the Lavin family.

Kathy's first child was born with Down syndrome and, at first, the young mother felt angry. But she says she has decided that Emily's birth, paired with her years spent working in the field of disabilities, might have been much more than a coincidence.

"I think you attract certain things in your life," she says.

After graduating from Boston College with a degree in human development and education, Kathy started her career working with people with disabilities in 1988.

First she oversaw group homes for Catholic Charities in her home state of New Jersey.

Eventually, at age 27, her path led her to Chicago when she began doing research at the Institute on Disability and Human Development at the University of Illinois at Chicago.

She forged lasting bonds with people in the group homes and those at work, though her managerial roles didn't require it.

"True to Kathy's nature, seeing what she could do and how she could help people flourish was her motivation," says Selima Ani, a former co-worker.

At the same time, Kathy met Jack Lavin and they married in 1995. A year later in May, Kathy graduated from the Jane Addams School of Social Work. Emily was born in June. Kathy felt her life fill with fear.

"Even being a professional, when it happens to you, it's a totally different ballgame," she says. "I thought, 'I can't do this. I cannot go back to working with people with disabilities.'"

Lynda LaCombe, Kathy's friend since college, says Kathy has always been open about the emotions she went through when Emily was born.

"Kathy loves Emily and delights in her, but she has always been very honest that it was difficult," LaCombe says. "Being a person who worked with adults with disabilities, she knew right away what Emily's future could hold and she grieved for that."

In the years after Emily's birth, Kathy shifted gears from her professional path and worked as an advocate and volunteer. Among other endeavors, she became a founding board member of Belle Center of Chicago, a non-profit organization serving the needs of children with disabilities. She also had two more children, Michael, 11, and Katie, 5.

Despite her love of Emily, "having Michael was a healing moment for me. It proved to me I could believe in myself to create something perfect," Kathy says. Meeting the challenge of having a child with special needs only a year into her marriage, Kathy's mother worried for her daughter's relationship with her husband, Kathy says. But she and Jack have become closer.

In fact, along with a trip to the cardiologist and ophthalmologist, Emily's doctor listed date nights for the parents as part of the treatment plan for Down syndrome.

"So we date every Friday still," Kathy says.

After 12 years of volunteer work and raising her children, Kathy is now the director of community relations at Neumann Family Services.

It's easy for moms to get lost in their children, especially if one has special needs, Kathy says.

"The biggest lesson for me is to say it's OK for me to put my oxygen mask on first," Kathy says.



And with that, she went back to spelling "Thursday" for Katie, asking Michael about his day and making sure Emily had everything she needed."


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