End The Wait Now! Campaign

Ordinarily, I try to focus on the positive in this narrative -- but this time, it's not possible. For starters, I'm filled with sighs and "OMG! . . . how could I have . . .?" laments for having failed to save my work that I was developing in Notepad to post to this blog. I didn't, I encountered a fatal system error, everything was lost, and this will be a very short post.

It originates in my frustration over the past several days to locate any timely, accurate, complete, and RELEVANT information at my State or County levels regarding help needed for Sarah. Already my husband and I had earlier reached our health plan's out-of-pocket expense (or "catastrophic coverage") limit for Sarah's medical and dental care. Meanwhile, however, the State had also determined her to be eligible for Medicaid as her insurer of last resort, even to pay toward necessary in-home care.

So in pursuit of what we hoped to help with our continual hemorrhage of money, it seems, I expended hours on the phone with State and County service providers. I also drilled down on their Websites, searching for information to better equip myself to navigate the maze. My goal was to "connect" her service determination, which was acknowledged to be "in the system," with receipt of a bona fide check or a funded service or item that she needs.

Well, despite the polite promises of those I talked to or the fine-sounding "Mission Statements" on their Websites, it turns out it was all shameful puffery. At best, good intentions, perhaps, but nothing more. The bald facts are these, and they aren't pretty (as I found out elsewhere on my own initiative):

As of September 2009, there is a waiting list of just over 19,000 individuals with severe developmental disabilities, including cerebral palsy, intellectual/cognitive deficits, autistic spectrum disorders, neuromuscular diseases and more in the State of Maryland! Many of them are in crisis situations, and 94% are in need of at least one service immediately.

Developmental disabilities are those that are significant, life-long, and begin at birth or during childhood (through the age of 21). BUT, while Maryland is a wealthy State, with the lowest rate of poverty nationally, it ranks 43rd for monies spent for assistance to this very same population. For the 22,000 affected individuals currently receiving help of some kind, State appropriations for the 2010 year were recently slashed $30 million, with additional budget cuts expected this month.

On its face, it seems clear to me that it's the "least among us" who are the most vulnerable and who are bearing disproportionately the cutbacks in State and local services due to our struggling economy. So my questions are two. First,"Oh c'mon! Why don't the government agencies involved just put on their Websites straight out 'Abandon hope all ye who enter here!' and instruct their people to be honest on the phone about a crisis situation." And second, and more importantly, "Why don't our State legislators attach some urgency to this and work to build out system capacity to end the multi-year wait?"

For more information, including personal stories, pictures, and videos, or to advocate on behalf of all those in Maryland with severe developmental disabilities, go to "End the Wait Now!" campaign, a targeted effort by the Developmental Disabilities Coalition.

1 comments

Posted by Sarah's Mom at 4:24 PM Permalink

Pennies For The Holidays

Do you hate the holiday “rush” as much as our family does? Especially now more than ever, trying to balance household needs with holiday gifts and charitable giving in rough economic times. Smart shopping means facing hard choices while trying to stretch every dollar, and even every penny.

Well, it’s official –- we're penny hoarders! We L-O-V-E them! And we now have an account at iGive.com where you can buy the things you need, save money with exclusive iGive coupons and deals, and benefit Sarah’s medical expense fund all at the same time! Pennies from heaven!

It's a free service, and you'll never pay more when you reach any of 700+ online stores you know and love in the iGive network. You'll find everything from daily necessities to special occasion and holiday gifts.

Here's how it works:



If this works for you, then save yourself a trip to the mall and avoid the long lines. Besides saving gas and time, you're helping us raise funds that are much needed and appreciated. [Note: iGive.com requires the name of an adult signatory when describing an account, so that's me, Sarah's Mom (Michele Pulaski) at Sarah Bear's Story.]

In closing, I was searching on the Web for some copyright-free images of pennies to decorate the "package" above, never dreaming that there are entire communities of numismatic penny hoarders and coin-stackers out there. Some of them specialize in building all manner of complex, cantilevered structures, made up of thousands of pennies. And some, like the "Penny Prankster," make really funny videos for good causes, like the one below.



Hey, we take pennies, too, but for used DME (that's durable medical equipment, where a pediatric wheelchair can cost as much as a car, actually). Remember, the places to go online are:

http://www.iGive.com/SarahBearsStory (for purchases), and

http://www.iSearchiGive.com/SarahBearsStory (click for pennies)

Thanks again! 0 comments

Posted by Sarah's Mom at 3:23 PM Permalink

Reaching For Milestones

That old saying that "Slow and steady Wins the race!" is so true. From our own experience, I know how poignant it can be for parents of children with special needs to cheer them on at every turn. And from reading the daily blog diaries of these parents, I share in their afterglow of pure joy at seeing our kids succeed. In our home, Sarah Bear continues to improve little by little. It seems like the smallest accomplishments take forever to achieve. And yet, when she hits a milestone, there is no better feeling in the world! Since Sarah was not predicted to do much at all, I take pleasure in the fact that she is proving the doctors WRONG!

Last week, Sarah started trying to crawl. After having worked on it for so long, it just happened -- at Sarah's pace! That's the thing. Sarah is ready when SHE is ready, and not before. While she undoubtedly has a strong will to do things, it's just on her schedule.

And so, she continues to improve with her undertanding of language, and can press a button on her toy when she wants to hear music (which she loves) . She also has started saying "Da Da," and even shouts "DONE!" when she finishes a meal. So, when I have my moments of "Why did this happen to Sarah?," I think about her smile and how she laughs when I tickle her. Then I remind myself what I said from the first day she became ill . . . if she can be happy, then that's truly all I need.

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Posted by Sarah's Mom at 11:12 AM Permalink

The "Pink Piggy" Van and H1N1

Yesterday afternoon, I was fortunate (to my surprise) to be able to get at our pediatrician's office swine flu shots for Sarah, Josh, and Emma. No-o-o!, the office wasn't mobile, and it sure didn't look anything like this van. Not that the humor of the moment would have trumped my children's outrage, even if it had. After all, I was culpable. I had suffered them to be vaccinated point blank. I was unforgiven for so long as it took to drive home and their little arms ached.

To be sure, whether or not to vaccinate for H1N1 at all, as well as what steps to take to care for one's child if s/he does get the flu, continues to weigh on parents' minds across the country. In addition to frequent hand washing to prevent the transmission of germs, many of us have also adopted instant hand sanitizers. I know that I, for one, carry them around in my purse, in the car, and packed in with kid gear to have on hand for those moments when we can't wash up. So far so good. Surfing the Web, though, my attention was drawn to an article about the dangers of their improper use.

Yes, under ordinary circumstances, instant sanitizers safely and effectively destroy the majority of bacteria and viruses that can cause illnesses. They are, however, potently toxic chemicals that can cause unintended injury. The most familiar danger is hand sanitizer poisoning, especially in the very young. Most sanitizers contain 60 percent to 90 percent alcohol (commonly ethyl or isopropyl alcohol) -- a stronger concentration than most hard liquors! If ingested, even a small amount could lead to dizziness, slurred speech, headaches, and even brain damage or death in extreme cases. That translates into being certain to keep them out of sight when not in use, and out of the hands of inquiring little people who might be attracted by their scents or packaging (like my three "peeps") . . . fer shur!

• For an outstanding resource, the "Special Needs H1N1 Toolkit," spotted by Randi Sargent, see her post on "Helping Our Children Understand Flu Prevention."


• For straight talk about the flu and you, facts for specific patient populations, a State-by-State flu clinic locator, and more, don't miss http://www.flu.gov.


• And catch this cute video PSA for small kids, entitled "Getting a Shot: You can do it!"

(double click the video to see a larger version play on YouTube.com)

Photo Credit: See Ellen's post, entitled "Update On The Swine Flu" at To The Max featuring the "Pink Piggy van." 0 comments

Posted by Sarah's Mom at 5:15 PM Permalink

Parenting In Survival Mode

Among the many things I am learning as a "newbie" to the blogosphere are the wonderful resources provided by families with special needs. Having just earlier today become a March of Dimes advocate to fight for healthy babies, it wasn't easy for me to revisit painful memories of Sarah in the NICU fighting for her life. So was I amazed (and pleased!) to stumble upon a truly wonderful Website designed to build a robust network of volunteers to help provide basic needs to parents with children in the NICU and PICU. The creator, Mandy, whose energy and generous spirit are truly inspiring, matches bloggers who can help to bloggers (or non-bloggers) who need help at this difficult time with their child.

Click on the link to go directly to Survival Mode Parent and learn more, including the locations of volunteers, and be sure to read the wonderful NICU primer, written by a remarkable Mom, whose own little girl, Maddie (short for Madeline) died just seven months ago . . . then read her touching, latest post at In the Scheme of Things . In honor of Maddie and the joy she brought her parents and family, the poem below expresses a beautiful sentiment, I think.

God Sent to Me an Angel
Written by Paul Dammann

God sent to me an angel, it had a broken wing.
I bent my head and wondered,
"How could God do such a thing?"
When I asked the Father why
He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious, and none is like the rest.
Each one to me is special, and the least is as the best.
I send each one from Heaven and I place it in the care
of those who know my mercy, those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen.
I am never far away.
So if you find an angel and you don't know what to do.
Remember, I am with you,
love is all I ask of you."

Hat tip: Poetry Soup For The Soul 0 comments

Posted by Sarah's Mom at 2:59 PM Permalink