What Lies Within

 "Go as far as you can see; when you get there, you'll be able to see further." Thomas Carlyle

"What lies behind us & what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson

Nic is making great strides these days. With the help of adaptive pedals, he can ride a trike. Soon, he’ll be getting his own wheelchair. However, unless you or someone you know has a child with the sort of special needs that require wheelchairs, adaptive toys like a trike or bike, walkers, special bath equipment, braces, immobilizers, and a lot of other products, I don’t suppose you can possibly imagine how this complicates child rearing.

Not that they have time to read this, but I just want to acknowledge Nic’s parents who coordinate weekly sessions with physical therapists, meet with social workers, visit specialists, drive to aqua-therapy, travel to doctors at the Mayo Clinic for botox injections, arrange occupational and speech therapy, and call about insurance coverage, all while just trying to be a mom and dad who provide for their family.

On top of all of the above, throw in learning about Nic’s rights under the Individuals with Disabilities Education Act (IDEA). As he approaches his third birthday, the Individualized Education Program, commonly referred to as an IEP, will become important as the blueprint for crafting educational experiences for him. And Nic’s parents will now really hone their advocacy skills.

I wish Nic’s parents and all of those other parents who perform heroically on a daily basis didn’t have to fight so hard for their children. I wish America would move closer to the spirit of these laws. But most of all I wish for Nic a life without limits.
 

Links I like:

National Dissemination Center for Children with Disabilities

United Cerebral Palsy: Life without limits for people with disabilities 
where there is located a link to: The State of Disability in America: An Evaluation of the Disability Experience

Lekotek: The country's central source on toys and play for children with special needs.
 
Toys R Us Toy Guide for Differently-Abled Kids

Publish Post

Krystyna

I had seen her only once before—the day when she came into the center to pick up birthday boxes for her two grandchildren and to ask if we could help the family for Christmas. That day I learned a bit about her. The boys’ mother, Krystyna’s daughter, died this year from a brain tumor. Krystyna, a woman near my age, was faced with raising the two young children and their older sister. With a thick Polish accent, she wondered aloud why some in her apartment building always seemed to get the help they needed but not her. “It’s not fair,” she said.

“We can put your name on our waiting list for Christmas help,” I told her, adding, “if we can help, we will call you.” I really wanted to help her. Every time I start identifying like this, I find I am pulled deeper into lives than is wise. By that, I mean I am haunted by a life that is not mine but that I imagine very well could be. That’s primarily the reason I left a social services job at the county a few years ago.

Since that time,I have learned to keep an open heart without becoming too involved. Krystyna was my test. Maybe, it was the grandmother thing. I don’t know.

So, as the time neared to start contacting the waiting list families, I was happy that our donors had been generous and we had plenty of toys and gifts left to give the waiting list families.

Krystyna showed up the first day. I saw her sitting off to the side. “Krystyna,” I called out to her, “is someone helping you?” “They say my name isn’t on the list,” she said. “Let me check,” I replied. As I flipped through the pages of names, I spotted hers. “There it is,” I said. “It’s okay,” I said, “I know Krystyna.”

When she had big bags of gifts at her feet, we hugged. Krystyna told me how the children had been baptized recently. “The priest found godparents for them,” adding with obvious pride, “a deacon!” I know little about their lives. I know she struggles. I know I would do the same if I were in her place. She and I share that—maybe little else—the grandmother thing. Life’s lessons always come at a price. And while I think of Krystyna’s struggles, I know it is best to focus on my own, knowing I can still keep my heart open for the time when the next “Krystyna” comes along.

Merry Christmas!

The world is but a canvas to the imagination.

There is nothing in a caterpillar that tells you it’s going to be a butterfly. Buckminster Fuller

Most grants and funding made to social service agencies addresses basic human needs. The not-for-profit I work for, the Humanitarian Service Project, does that too with our summer Feed the Kids Project. At Christmas time, we help families with two to three weeks of food and gifts for all of the children. And year-round our Senior Citizen Project delivers a monthly food package to needy seniors in our area.

But there is more to life than basic needs. Our Children’s Birthday Project, is described on The Common Grant Application as “an early intervention program for children ages 3-12, to bring joy and self-worth to poverty-level children on their special day at an age while they were still impressionable but before they were subject to intense peer pressure and the appeal of negative influences such as gangs.”

That’s a mouthful but what it boils down to is we think even poor kids should know their birthdays are worth celebrating!

So, we collect new toys and books, school supplies, and stuffed animals. Every box also includes what we call a party-in-a-box with all the makings of a fun birthday celebration like cake mix, frosting, paper plates, streamers, and party favors.

Now, we are hoping to include an arts and crafts kit in the birthday boxes if our donors support the idea. Arts and crafts kits with drawing and painting supplies of all kinds, craft supplies—you name it. We see it as a creative and positive opportunity to enhance the lives of our program’s children. With schools cutting back on funding for art education, I think many kids grow up failing to discover their innate creativity. And poor families just scraping by surely don’t have money left over to spend on art supplies.

All week I have been caught up with this notion. I have a growing list of ideas with over 30 suggestions so far. If any of my readers know of organizations or manufacturers who might be able to help as we get this underway, please let me know. We are a small grassroots organization, highly regarded, but also with a small staff.

I am excited about the possibility. Here is the list I have come up with so far. Wonder what I have forgotten?

Don’t Let the Bedbugs Bite

No “Good night, John Boy,” at my childhood home. It was always Mom saying, “Night, night, don’t let the bedbugs bite.

I just thought it was a sweet way to close the day. Later, I realized bedbugs are real. And maybe you have had an up close and personal encounter.
But Fort Collins, Colorado, apparently does not plan to become a bedbugs mega center.
Colorado State University’s annual Great Sofa Roundup was canceled after organizers worried they might be recycling the little critters as residents hauled used sofas to a CSU parking lot instead of dumping them in alleys at the end of summer leases.

However, when I came across a toy with a bedbugs theme, I had to get it for Nicolas as I gradually build up a Gramma stash of little guy accoutrements.

Defining Moments

I hate labels. No, not the kind on food or medicine, which are practical and helpful except when they are deceptive.

The labels I hate are the kind applied to people. Mostly, I hate them because they do not define a person, only a condition, or at least what some expert seems to think is the condition. So what.

Somewhere along the line someone said I was shy. Is that bad? We introverts are supposed to extroverts. That is the norm. It took me some time to say, “You’re OK. I’m OK.”

As is the case often these days, my fractured mind took me off course. The excerpt below is what got me to thinking about labels. Dear Gentle Readers of some standing may remember my grandson Nic’s extremely early arrival into this world at 26 weeks, 1 pound and 12 ounces in February 2008. Then as now, we worried how these circumstances might impact his life.

While Nic has already overcome many hurdles, he has his work cut out for him. Of course, he is not alone in his journey. In addition to family, Nic has an army of specialists and experts on Team Nic. Here’s what Nic’s mom had to say recently,

We have been worried with the continued stiffness that Nic has in his legs, feet and pelvis. Upon several expert suggestions, we decided to take Nic to Children's Memorial Hospital in Chicago to see a pediatric physiatrist, who specializes in whole body movement. Nic hasn't been able to sit up on the floor by himself because the tightness makes him fall to one side or throw himself backward. It also can make him “slouch” when sitting in a highchair. The physiatrist confirmed what we thought, which is that Nicolas has Cerebral Palsy in the form of spastic diplegia. This means that the legs are primarily affected, and also minimal tightness in the arms. This type of CP does not usually affect the cognitive or social abilities of the kids who have it, and does not get worse. CP is a condition that you are born with and that does not progress. Right now we know that the brain trauma he suffered after premature birth is causing his brain to send chemicals to his legs to make them stiff. Although it is hard to have your child labeled like this when he is so perfect in your eyes, we know that CP has a wide range of effects, from very mild to severe. Right now the doctor classifies his as mild.

We are going to have to help Nic continue to work hard to stretch and loosen these muscles in order for him to be able to sit up and eventually walk. That is a scary proposition for any parent to be told that your child may not walk. But, we have great faith in Nic’s abilities and are so proud of his determination so far. He already is exercising and stretching himself and helping himself make progress. I already can’t help but think of him as a tough guy and look at other kids differently because they don’t work as hard as he does. I’m sure that will always be the case.

Other things that we will be doing to try to help him progress is adding PT for a second time a week, starting Occupational Therapy, and also adding Aquatic Therapy once a week. Yes, Nic is going to get more pool time! He loved his first swimming class with Jeff at the Rush-Copley Healthplex, but now he will be trying therapy in the water one-on-one with a PT. I think he will really like this and we will continue to feed his love for the water. This weekend he used his baby pool on the deck for the first time. We will also be using the braces for his feet and knee immobilizers to help him stretch and keep his feet in the correct position. There may be other orthopedic devices that we employ here in the near future.

Down the road Nic may also need surgery, Botox injections, serial casting or oral medications to loosen the muscles as his bones grow longer. The Physiatrist specializes in kids with CP and is going to help us coordinate all his care so we don’t get lost in a sea of opinions.

It is what it is. It is not what it will be.


NOTE: Lisa Belkin has a parenting blog over at the New York Times called Motherlode. She recently posted a wonderful piece of writing by David Sexton titled “Out a Breath,” which was about having a child with Cerebral Palsy.

Be Big

I entered this contest yesterday. You should too. You don't have to be a kid either. Scholastic is encouraging everyone to Be Big and think creatively about how we can help our communities. Go for it! You have until June 26. Wonder what I suggested? Just ask.

A Cause for the Little Ones

February 23, 2008, doctors at Rush Copley Hospital in Aurora, Illinois, delivered Nicolas Bryant Noblitt at 26 weeks gestation. In case you “don’t know nothing about birthin’ babies,” that’s way too early.

Baby Nico spent 101 days in the neonatal intensive care unit, best called NICU by those families all too familiar with NICU alarms, monitors, endless tests, teams of medical professionals, and constant worry about what comes next.

On the cusp of summer, Nic came home that sunny June day with machines, monitors, and tubes and wires. Not exactly the vision most new parents have for their baby’s homecoming. Books like “What to Expect When You Are Expecting” and its cousins can hardly prepare new moms and dads for the exhausting and anxious ride they are in for when their baby is born prematurely.

So worried and hungry for more information shortly after Nic’s birth, I turned to the March of Dimes Web site to learn more about what this little guy could face. It delivered (pardon the pun).


The March of Dimes is a charitable organization I supported long before baby Nic came into this world. As a schoolgirl in the late 50s and early 60s, I remember the March of Dimes coin cards handed out to raise money. Think about it, this campaign worked! When President FDR founded the National Foundation for Infantile Paralysis, that was the goal—find a cure. Dr. Jonas Salk’s vaccine against polio did just that. Dr. Albert Sabin’s oral vaccine brought even easier access to protection. Little pink sugar cubes dosed the vaccine to millions worldwide.

With the success of the vaccine for polio behind it, the March of Dimes shifted its focus to preventing premature births and fostering research into helping those little ones born too soon have a shot at a good life. And today, they fund research that gave Nic and his NICU buddies a chance. Yes, I know the organization needs to work on fiscal responsibility, and since I work for a 4-Star Charity Navigator nonprofit, the fact that March of Dimes is not there yet bothers me a bit. However, they have my support.

If you happen to be in northern Illinois on Sunday, April 26 at 8:00 a.m., join Team Nic at Pottawatomie Park, 8 North Avenue in Saint Charles. And if you can’t make it, follow the link and help Natalie reach her goal.

And visit Nic on ciao-nico. He is surely one cute guy.

Tis the Season

Matthew 17:19-20 “Then the disciples came to Jesus privately and said, ‘Why could we not cast it out?’ He said to them, ‘Because of your little faith. For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.”

Long-time readers may recall a couple of years ago, I wrote extensively about Christmas. Starting about this time in November of 2006, I focused numerous posts on the topic of Christmas. Last year brought the 2nd Annual Christmas Countdown and with this post, I, as the proprietress of the Alabama Kitchen Sink blog, hereby and forthwith launch the 3rd Annual Christmas Countdown. TA DA and you may now pop the cork on the bubbly.

There’s a new twist this year. You see, my 9-5:30 workday is as one of Santa’s elves. Do you think I’m kidding?

Okay, I am not really an elf, but I feel like one and my days revolve around getting ready for Christmas, and I get paid for it. Wonder what Santa pays his elves? The nonprofit I work for, the Humanitarian Service Project, is helping 1,400 needy children and 115 low-income seniors this Christmas as the organization has helped those in need for nearly 30 years.

It all started that Christmas in 1979 in the spare bedroom of the founders. Year by year community support grew as did HSP’s reputation. A couple of years ago, the organization moved into a location with its own warehouse for storing the food and toys collected.

Located in central DuPage County, Illinois, HSP serves the forgotten in a sea of plenty. The people we help are hard-working families with children or seniors trying to stretch meager incomes to provide just the necessities like food. We wonder what the Christmas Project will bring this year. Already we have lost some sponsorships for our seniors.

Each day I talk to struggling families. Jobs are lost, illness strikes. A mother must tell her little ones Santa can't make it to our house this year. Why? How would you answer that question? Surrounded by the materialism of our culture, I would think this is a hard question. Some may say that we reap the rewards or failures of our own self determination, hard work, and choices.

One of my co-workers and I were talking about what makes people give to others while some choose not to help. An interesting thought best pondered another day.

The Humanitarian Service Project is an Illinois not-for-profit corporation, and a Four Star Charity Navigator Charity. If you’d like to make a donation, you may do so through Network for Good.

Mission Statement: It is the mission of the Humanitarian Service Project to alleviate the pain and suffering that poverty brings to needy seniors and children living in DuPage and Kane Counties, Illinois, without distinction of gender, race, creed, caste, or color.

A Tale of Two Nic's

Mom reports on baby Nic’s CarePages Web site:
“Nic got a special delivery today from Nick Swisher of the White Sox. He signed his name and “D30” on the sentimental blanket we dropped off at the White Sox office and mailed it back to us with a nice note from Swisher, via the community relations dept. We weren’t sure that would happen, but it’s a great keepsake to have from his first baseball season. Not only does Nic share Swisher’s first name, they also have the same fighting spirit. Let’s hope the White Sox carry the season into October for Nic!”

In Chicagoland, you are either a Cubs fan or a White Sox fan. Well, that’s my opinion. It’s kind of like Auburn and Alabama. You can’t really be for both. No way.

When the family attended the recent White Sox game, they took the White Sox blanket that accompanied Nic through heart surgery and asked if Nick Swisher could sign it for Nicolas. Happily, the great White Sox player obliged, and now the littlest White Sox fan has a nice memento.

Go White Sox!

Little Pleasures

New grandmas are apt to go overboard. How can you walk into a department store without seeing something just too cute to pass up? I steadfastly assert that I am not yet one of THOSE new grandmas.

My latest purchase was only $5 and it was for a good cause too. The other day while paying for some socks, I noticed the Kohl’s Cares for Kids books and plush animals near the checkout registers. Kohl’s says it donates all of the net profits to organizations working with health and education programs for children. Eric Carle’s “Polar Bear, Polar Bear, What Do You Hear?” caught my eye. Carle, illustrator of the classic, “The Very Hungry Caterpillar,” creates wonderfully bright and charming tissue paper collages.

Depending on your age, you probably grew up with Carle’s books or bought them for your children or grandchildren or as baby gifts. My son still has his tattered copy, which has now been passed along to the newest family member, Nicolas.

So, this little hardback became the latest addition to Nic’s blossoming library. You would imagine a family of writers would love books, wouldn’t you? I don’t know if Nicolas will be a writer or set out on his own course, but so far, this little guy has had one incredible journey. For now, his parents are telling his story on their new blog, Illinois Preemie. Later, Nic, Grandma Sheila expects to hear from you.

Practical loses out to indulgent

Like one of my favorite bloggers, I don’t write about products for pay. Yes, I know there is a Google ad at the top of this post, but I don’t even bother to see if there is any money in my account, and I certainly have no control over what ads Google plops up there. Ads for Ann Coulter books, sexy singles, quilting supplies, the University of Alabama and of course kitchen sinks—they are all somehow related to the content here or at least Google seems to think so, although I still haven’t figured out the sexy singles connection.

So, this cute little Springer Spaniel stuffed animal by Douglas is not an ad. As a new grandma, I am prone to impulse purchases. Ogilvy, a Springer Spaniel plush dog, was one such purchase. I thought new grandson might like this much quieter liver and white spaniel to match the real life Monte version.

I know new parents would love more practical purchases, but sometimes a grandma just has to be indulgent.

Coloring books

Do kids still color in coloring books? I know I loved them. If I had to be home from school because I was sick, my mom always picked up one at the drug store when she collected my prescription. And even in healthy times, I could often be found coloring away. Maybe they do curb artistic expression in some, but I credit them with giving me a chance to experiment with color. Anyway, I went on to do my own thing eventually.

Dover Publications puts out some of the nicest coloring books these days and they are a fairly inexpensive way to introduce kids to art. This designer likes and uses Dover Publications often for inspiration. If you sign up for the Dover Sampler, they’ll even E-mail you free designs to download each week such as this floral sample.

Looking at the sample almost makes me want to round up the Crayolas. Speaking of which, check out this link to Crayola.com for online coloring fun. You can choose from colored pencils, markers and of course, Crayolas.

Do you remember how exciting it was when school started and you got that huge box of crayons? There seemed to be infinite possibilities then. I charge you to explore your creativity. And don’t tell me you aren’t creative, because I will just think you aren’t trying.

Note: the sample is from Color Your Own Great Flower Prints