The Spina Bifida Resource Guide

How I Botched My Daughter's First IEP

2012-01-29T13:07:00.000-08:00

My daughter's first year of preschool has not exactly been all I had hoped it would be and much of that rests on my shoulders and how I approached our very first IEP meeting. Here are some of the mistakes I made:

- I Should Have Educated Myself: Those first couple of years with our daughter were busy and stressful. I'm a college-educated man of at least average intelligence so I figured there was no reason I couldn't sit down with a preschool teacher and hash out a common sense approach to what my daughter needed at school. Plus, who wants to read up on public school IEP mumbo jumbo when you already have your hands full with the day-today? What I should have done is started reading little by little once my daughter turned two so that I was better prepared for our first IEP meeting once she turned three.

- I Didn't Ask For Help: While slowly reading up on the ins-and-outs of the IEP process, I should have been interviewing friends and relatives who were teachers. I should have spoken with other parents who had already been through the process. I should have contacted a local advocacy program for a consultation. I should have considered enrolling in one of the many affordable (if not free) seminars on special education that are offered in my area.

- I Went In Alone: I didn't have much faith in the abilities of our Early Intervention Coordinator so when she offered to come to the IEP meeting with me, I declined. Instead, I should have contacted my Early Intervention office and asked to be switched to a coordinator who had the most expertise with IEPs and then taken him/her with me to the meeting. If not that route, I should have hired an advocate or at the very least taken a more knowledgeable friend with me (at least for that very first IEP meeting anyway).

- I Assumed That the Large Number of People at Our IEP Meeting Was an Indication of The School's Dedication to Serving My Daughter: The truth is, certain people from the district are required by law to be there (generally speaking they are): At least one general education teacher, at least one special education teacher, a school district representative, the person who assessed your child, often a typist taking notes and others as needed. The reason so many people need to be there is 1) To protect the school district and 2) To craft the best plan for your child. In. That. Order.

- I Assumed The IEP Meeting Was a Kum-by-ya Event: where people who had dedicated their lives to helping darling children such as mine would hash out in a common sense way what was best for her education. In reality the IEP meeting is a quasi-legal proceeding in which the parent advocates for how their child is going to be treated, educated and what services will be provided. The IEP is a written contract between you and the district. You want the IEP to protect your child if the district doesn't hold up their end of the bargain and the district wants the IEP to protect them in case you decide to file a complaint or worse yet, sue.

- I Assumed the School Would Make Necessary Modifications to the Playground as Needed: My daughter is in a wheelchair and even though the school did not have an accessible playground, I assumed they would make reasonable modifications. Imagine my surprise when my wife came home in tears after volunteering at our school because my daughter was spending recess time in her wheelchair watching the other kids play. I spoke with the principle and her response was, "I will have to look at her IEP". I should have addressed the issue of integrated play more aggressively in our IEP meeting.

- I Assumed the School Would Integrate My Daughter with the Other Students in Her Class: When an emotionally disturbed student began attending my daughter's class, we became concerned she would be trampled if she was playing on the floor. The school district's answer was not to get the new student what he needed but instead to confine our daughter to her wheelchair for the entire school day; even when the other students were sitting on the floor playing or in singing/circle time etc. I should have more aggressively addressed classroom integration at our IEP meeting.

- When Many of My Assumptions Proved to be False, I Felt Betrayed: The truth is, I had an understanding of the IEP process that was not rooted in reality. My lack of preparation contributed to me making all sorts of "common-sense" assumptions that proved to be false. When my assumptions proved to be false, I had many sleepless nights bemoaning how the school district betrayed us.

I should have educated myself, asked for help and taken an IEP ninja with me. Instead, I went in with a song in my heart and my heart on my sleeve. I could have sent a Golden Retriever in my place for all the good I was at our first IEP meeting.

The Good News Is: You can always call another IEP meeting when you feel the need to make adjustments or corrections.

So I Have Learned: Its okay to love and support your school and your teachers:

But when it comes to crafting an IEP, do yourself a favor and become an IEP ninja or take someone with you who is:

I have learned from my mistake. If you have your first IEP coming up, I hope you have too!

Step 3: Get a Handicapped Placard

2012-01-23T12:36:00.000-08:00

More Info on Government Programs Here.

Before you dismiss the idea; a handicapped placard is about much more than parking in blue spaces.

Chances are, you are going to be visiting the hospital quite a bit this first year. Even if you NEVER park in a blue space, most hospitals will waive the parking fee if you show them your placard. I personally paid out over $100 in parking fees our first six months before a shocked nurse asked me why we didn't have a handicapped placard.

Again, even if you NEVER park in a blue space, most states will allow you to use public parking for free (ie; parking on the street and not having to feed the meter). In addition, most states will let you park in green zones (usually a 10-20 min limit) as long as you like.

We almost never parked in a blue space until our daughter received her first wheelchair and even now that we have a wheelchair we don't always take advantage of the blue spaces. But you becha' we used the placard to from the day we got it to save money whenever we could!

Typically, it is your pediatrician who will fill out the necessary form for you. You take it to your local vehicle registration office and voila!

For a run down on the Disabled Parking Laws by country and state, Click Here.

Step 6: Apply for HIPP

2011-12-06T09:54:00.000-08:00

More Info on Government Programs Here

HIPP stands for "Health Insurance Premium Payment Program". HIPP is not an entitlement program. It is a program that is set up to possibly save both you and Medicaid money by shifting the primary burned of health care costs to your typical insurance carrier.

Although each state administers it a little differently, here is how it basically works:

Once you apply for HIPP, Medicaid (MediCal in California) will determine which of the two is likely to be greater: 1) Medicaid payments to cover your health care or 2) Your typical health insurance plan premium.

If Medicaid determines that your typical health insurance monthly premium (for example you health care plan through your employer) is less than Medicaid paying for your health care, HIPP will pay your family's health insurance premiums for you (typically they will send you a reimbursement check).

This means your typical health insurance premiums are paid for, saving your family money, and your health insurance plan gets billed FIRST before Medicaid which saves Medicaid money.

Each state has it's own requirements for the HIPP program so it is probably best to go to your state's website, and do a search for "HIPP".

Link to California's HIPP Program.

Step 10: Consider Shriners

2011-04-07T04:57:00.000-07:00

More info on Government Programs Here

Shriners is NOT a government-funded program. Shriners is a private organization that raises it's own donations to provide health care to children with disabilities. Shriners has a network of hospitals throughout the United States and the world providing some of the most cutting edge health care available.

Children are accepted at Shriners if, in the opinion of the medical professionals there, the child could benefit from their services. All services are 100% free - regardless of the family's ability to pay.

Shriners' Mission

Locations of Shriners Hospitals

How to Apply

You may apply through your local Shriners organization or fill out an application online.

Online Application

Step 9: Apply for other State and County Programs

2011-04-07T04:43:00.000-07:00

More info on Government Programs Here

WIC, SSI, Medicaid, SCHIP and Early Childhood Intervention are funded whole or in part by the Federal Government and as such, each State has some version of them even if they call them something different (for instance, Medicaid is called Medi-Cal in California).

In addition, your State or County may have additional resources available to you (for instance, CCS in California).

The best way to find out what additional programs might be available to you is to ask the service providers you are already working with such as:

- Pediatrician
- Physical Therapist
- Early Childhood Intervention coordinator

Step 8: Apply for CCS (California)

2011-04-07T04:35:00.000-07:00

More info on Government Programs Here

CCS stands for California Children's Services. CCS is a State and County program designed to meet the additional health care needs that children with disabilities have. CCS works in conjunction with Medi-Cal (aka Medicaid) and Healthy Families (aka SCHIP).

Depending on your County, some CCS good and services, such as Physical Therapy and durable medical equipment such as wheelchairs, may be available to your child based solely on their disability. In order to get the full range of services available to your child through CCS, you will need to fill out a CCS application.

How to Apply

1. You will first need to apply for SSI Disability benefits (See Step 3)

2. If you are approved for SSI Disability benefits, you will automatically receive no-cost Medi-Cal. If you are denied SSI Disability benefits, you will need to apply to Medi-cal directly (See Step 4)

3. If you are not approved for no-cost Medi-cal, you will need to apply for Healthy Families (See Step 5)

4. Fill out the online CCS application, print it and mail it to your local CCS office

CCS Overview Link

CCS Application Link

Step 3: Apply for Early Childhood Intervention Services

2011-04-05T09:32:00.000-07:00

More info on Government Programs Here

There are a number of reasons you want to apply for Early Childhood Intervention Services:

1) The sooner you identify any delays in developmental milestones, the easier they are to correct

2) In some states (such as California) your ECIS case worker will be the one to help get you approved for Medicaid (MediCal in California)

Early Childhood Intervention Services is a product of the Federal Individuals with Disabilities Education Improvement Act (IDEA).

From Wikipedia:

The program mandates a statewide, comprehensive, multidisciplinary service system to address the needs of infants and toddlers who are experiencing developmental delays or a diagnosed physical or mental condition with a high probability of an associated developmental disability in one or more of the following areas: cognitive development, physical development, language and speech development, psychosocial development, and self-help skills.

Once again, each State administers their Early Childhood Intervention Services differently. Some states may have it as part of their Early Head Start program, some may have it as different agency under a different name.

The goal of Early Childhood Intervention Services is to assist your child in meeting typical developmental milestones. For a more specific list of services, see Wikipedia's Early Childhood Intervention Services link.

Wikipedia's Early Childhood Intervention Services Link

Wikipedia's Early Head Start Link

In California:

In California, the Early Childhood Intervention Services program is called simply Early Start and is administered through the Department of Developmental Services. Services are provided through various "Regional Centers" and so the program is often referred to as "Regional Center", "Family Regional Center" or "FRC".

California's Early Start Link

How to Apply:

In most states (such as California), the way to access ECIS is by getting a referral from your pediatrician.

Step 7: Apply for SCHIP

2011-04-04T08:59:00.000-07:00

More info on Government Programs Here

SCHIP stands for "State Children's Health Insurance Program". The program is designed to provide health care to children from families of modest income who may or may not qualify for Medicaid. The Federal Government provides matching funds to States for their SCHIP programs.

Wikipedia SCHIP Link

Once again, each State administers their SCHIP program differently and under different names (in California, SCHIP is called "Healthy Families").

Why you should apply for SCHIP:

1. Qualifying for SCHIP may make you automatically qualified for other programs in your state

2. Even if you do not qualify for SCHIP, some programs in your state may require that you be denied SCHIP before they will process your application for their program.

How to apply (outside California):

You will need to do an internet search for the SCHIP program in your state or contact your State's health department.

How to Apply in California:

1. If you have applied for HIPP (step 6), MediCal should have already made a determination on whether you are eligible for Healthy Families since MediCal will only approve you for HIPP if you do not qualify for Healthy Families.

2. In California, if you were not approved for HIPP or are not eligible for NO COST Medi-Cal, your application for Healthy Families should have been automatically forwarded to Healthy Families by your local Medi-cal office. THIS DOES NOT ALWAYS HAPPEN. So you will want to apply directly to Healthy Families to make sure.

3. Apply Online. If you do not wish to apply online, you may call 1-800-880-5305 to have an application sent to you.

4. If you apply online, at the very end of the application process, you will be given a fax cover sheet with a bar code on it to print. The fax cover sheet will indicate what supporting documents you will need to send to Healthy Families (such as pay stubs etc.).

*Don't worry if you do not have access to a fax machine, you can also use the printed fax cover sheet to mail your supporting documentation.

Healthy Families Home Page

Healthy Families Online Application

Step 5: Apply for Medicaid (Medi-Cal in California)

2011-04-02T08:11:00.000-07:00

More Info on Government Programs Here

Medicaid is a Federally-funded, income-based program that provides medical care to needy families. If you qualify for Medicaid, it will essentially act as a secondary health insurance provider to cover things your typical insurance does not. Medicaid is administered by your state and each state administers the program a little differently. For example, California's Medicaid program is called Medi-Cal.

Wikipedia Medicaid Link

Wikipedia Medi-Cal Link

Medicaid and SSI:

1. Why you must apply to SSI first: You are going to want to apply to Medicaid based on your child's disability. Medicaid will require that you first apply for SSI Disability benefits before they will complete your application for Medicaid Disability benefits (See Step 3)

2. I applied for SSI Disability benefits and was approved: If you qualify for at least $1 in SSI benefits, your are automatically approved for Medicaid benefits. You will want to contact your local Medicaid office to make sure they understand that your child is disabled.

3. I applied for SSI and was denied: While qualifying for SSI makes you automatically qualified for Medicaid, being denied SSI does not necessarily mean you will be denied Medicaid benefits. The income requirements for Medicaid are less stringent than those for SSI.

Some Additional Things You Will Want to Know:

Beyond SSI and Medicaid, each state has it's own additional programs to assist the disabled. Most of these programs will require that you have applied for Medicaid benefits before they will process your application for their services.

Many states have Medicaid disability waivers which means that you will be automatically approved for Medicaid based on disability rather than income. This means that when you apply for Medicaid, you will want to specify that you are applying on behalf of your disabled child. For example, in California, you will want to contact Medi-cal and request "A full Medi-cal evaluation, not an evaluation for special programs alone." Also in California, you will want to request that your case worker complete a "DAPD Packet in accordance with Medi-cal Program Guide Section 5-4".

How to Apply:

It will be best to do an internet search for the Medicaid department in your state otherwise, you can try beginning at the Federal Medicaid site.

In California:

Medi-Cal Homepage

The first thing you will want to do is contact your Regional Center (Early Intervention) case worker. You need to request a Department of Developmental Services Institutional Deeming Medicaid Waiver Referral.

Once you have that referral, you will want to contact your nearest Medi-Cal office and request an application. Once again, be sure to inform them that your child is disabled and you want the following:

- A FULL Medi-cal evaluation - not and evaluation for special programs alone.
- Your case-worker to complete a DAPD Packet in accordance with Medi-Cal Program Guide Section 5-4
- Attach the Institutional Deeming Medicaid Waiver Referral

All Medicaid / MediCal dollars are not the same. How you are approved determines where the funds come from for your child's care. California will first try to approve you based upon your income. If they cannot approve you based on your income, they will approve you based upon the Institutional Deeming Waiver.

Four Possible Outcomes:

1. You will be approved for full-scope, no-cost Medi-Cal coverage

2. You will be approved for restricted Medi-Cal coverage

3. You will be approved for Share of Cost (SOC) Medi-Cal coverage
If you are approved for SOC coverage, Medi-Cal will let you know what your monthly SOC is. This is the amount of money that you must pay out-of-pocket in any given month before Medi-Cal assistance will be made available to you.

3. You may be denied Medi-Cal coverage

Step 4: Apply for SSI Childhood Disability Benefits

2011-04-01T05:40:00.000-07:00

More info on Government Programs Here

SSI stands for Supplemental Security Income. It is a Federally-funded, income-based program for the aged, blind or disabled. If you qualify for SSI, they will send you $$ each month to help with your expenses. SSI does not provide medical assistance. SSI is the same in every state.

While SSI is a program for the aged, disabled and blind, it is strictly income-based. In other words, you may be aged, you may be disabled or you may be blind but if your income is too high, you will not be approved. If you are approved for $1 or more in assistance from SSI, you will automatically be approved for medical benefits through Medicaid (Medi-Cal in California).

Why you need to apply for SSI Childhood Disability benefits:

1) Should you be approved for assistance, SSI will not only send financial assistance directly to you, but it will send additional financial assistance to Medicaid on your behalf based on your child's disability.

2) One of the requirements for Medicaid is that you first apply for SSI Childhood Disability Benefits.

Wikipedia Link

SSI Childhood Disability Benefits Link

How to Apply:

1) Go to the SSI Childhood Disability Benefits link above and print the following:

- Factsheet

- Checklist (if you have already completed your Documents Folder, everything you need should be in there)

- Worksheet

2) Complete the printed worksheet from step one

3) Complete the Child Disability Report online or print a copy and complete by hand

4) Call SSI to do a preliminary phone interview and schedule an eligibility interview: 800-772-1213. (SSI eligibility interviews are usually conducted by phone however if you are applying for SSI Childhood Disability Benefits, you may have to go to your nearest SSI office for an in-person interview)

Step 2: Apply for WIC

2011-04-01T04:49:00.000-07:00

More info on Government Programs Here

"WIC" stands for Women, Infants and Children. It is a federally-funded, income-based nutritional program set up in 1972. Basically, it helps to pay for your groceries until your child turns 5 years old (including infant formula, baby food, cereal, milk, eggs etc.).

WIC serves approximately 45% of all infants born in the United States.

The reason I would suggest applying for WIC first is that it is one of the easier programs to qualify for and it will start saving you $$ and get you groceries that you need right now. In addition, some utility companies partner with WIC to give discounts to WIC participants.

Each state administers WIC differently and different agencies within each state may participate in the administration of WIC. To find your nearest WIC agency, you can click on the Federal Link below or do an internet search for the name of your State, County or City WIC agency.

Wikipedia Link Here

Federal Link Here

California Link Here

Step 1: Get a Document Folder Going

2011-03-31T09:23:00.000-07:00

More Info on Government Programs Here

Many of the programs you will be applying for will require that you provide the same documents over and over. I would suggest creating one master folder of all your original documents that you can copy from for various Government Program applications.

Take this folder with you whenever you have an interview for a government program.

Some of these items may not apply to you specifically, some you may not have yet but will obtain as you go through the application process.

Your folder should include the following:

- Name, address and phone number of every doctor, therapist, hospital and clinic that has seen or treated your child in the last year

- Any medical records you already have, including the dates the child was seen or treated and the child's patient ID number(s)

- List of the medication(s) the child is taking

- Child's state-issued medical assistance number, if any. (In California, this would be the number on your child's BIC card)

- Copy of the child's Individualized Family Service Plan (IFSP) for early intervention services or Individualized Education Program (IEP) for special education services, if the child has one.

- Names, addresses and phone numbers of any social service programs and the name of caseworkers that have information about your child

- Name, address and phone number of any other adult who helps care for your child and may be able to provide additional information about your child

- An original or certified copy of your child's birth certificate. If your child was born outside the US, you will need proof of US Citizenship or legal residency

- Photocopy of Social Security cards for every adult and child who lives in your household

- Proof of current income for all family members living in the household (pay-stubs, self-employment tax returns, unemployment or other program benefits, child support)

- Proof of resources for the child and parents living in the household (bank account statements, life insurance policies, certificates of deposit, stocks or bonds)

- Photocopy of most recent Rent or Mortgage statements

- Property tax statements for all property

- Photocopy of the registrations of all automobiles, boats, campers and trailers owned

- Photocopies of all burial trusts / prepaid burial contracts/information on burial plots

- Photocopy of any current Health Insurance cards

October is SB Awareness Month

2009-10-17T19:18:00.000-07:00

Teaser:

The Centers for Disease Control and Prevention (CDC) has released new data indicating the number of people living with Spina Bifida in the United States is over 180,000 – more than double the previous estimate of 70,000.

Read It

2009-10-16T12:29:00.001-07:00

Powerchair Diaries

Teaser:

Arthur Blank was one who, in 1978, could have easily lost faith and gotten stuck in the depths of his sudden change of seasons, his winter. After a decades-long career with a national home-improvement chain of stores, he’d worked his way up to regional manager, a very lucrative, prestigious position in the company. But, one day in 1978, after 30 years of loyalty, Arthur Blank had a disagreement with the company’s executives – and he was fired on the spot.

It’s hard for anyone to get fired, ushering in a roller coaster of emotions that are understandably filled with defeat and self-doubt. And, Arthur Blank had them, too. But, not for long. See, Arthur Blank instinctively knew about seasons of change, and when he faced his winter – abruptly fired after 30 years – he was already looking toward his spring, where he wasn’t only going to survive life’s harshest times, he was going to use the changing of seasons to come back exponentially stronger.

Later that year, Arthur Blank co-founded a store that you may have heard of: Home Depot.

First Prosthetic Ironman

2009-10-06T09:32:00.000-07:00

Carry On

2009-09-21T12:21:00.000-07:00

This video from ESPN just gets better and better as you watch it.

Teaser:

Leroy Sutton was 11 years old at the time, walking to school with his brother along the Wheeling and Lake Erie railroad tracks near his home in East Akron, Ohio. A freight train approached, and Leroy got too close. His backpack got caught on one of the passing cars, and he was pulled beneath the wheels . . .

"The whole time I was in the hospital, I just asked, 'Why? Why?'" he said. "Every night I could not go to sleep … because when I tried, I'd end up hearing the sound of a train."

Leroy left the hospital a month and a half later. He endured long, difficult hours of rehabilitation. He accepted that a wheelchair would be part of his life but was determined to make it a small part.

"I did not want to be in my chair," he said. "I had to build my arm muscles up so I could move around. … I move around on my arms a lot."

That ability to move -- to lift and flip and twist his body -- led him to a place few expected, and into a friendship few could have foreseen.

In January 2008, midway through his junior year in high school, Leroy transferred to Lincoln-West High in Cleveland. By the time he was a senior, he was a familiar sight (his wheelchair flying down the hallways) with a familiar refrain (his laughter booming off the lockers). When he decided to join the wrestling team, just as he'd done at his previous school, the coaches welcomed him. They knew his story and were eager to tap his strength.

"I told him, 'You've been hit by a train. What else, what kid, what wrestler, what can stop you?'" said Lincoln-West coach Torrance Robinson.

Daniel Pelletier, Paraplegic Skateboarder

2009-08-31T11:35:00.000-07:00

City to host Ms. Wheelchair America pageant this weekend

2009-08-24T07:59:00.000-07:00

A diverse group of women from 27 states -- college students, volunteers, office workers, grandmothers -- will gather in Rapid City this week to compete for the national Ms. Wheelchair America title.

The 37th annual pageant will be at Rushmore Plaza Holiday Inn. In 2000, the national winner was Tracy Charlton-O'Conner, whose parents, Terry and Karen Charlton, live in Rapid City.

This year's winner will succeed the reigning Ms. Wheelchair America Michelle Colvard, who is the executive director of the City of Houston's Office for People with Disabilities.

If you go:

The 37th Ms. Wheelchair America pageant will be at Rushmore Plaza Holiday Inn. Public programs include:

Friday, Aug. 28 -- 6:30 p.m., contestant platform speeches.
Saturday, Aug. 29 -- 6 p.m., pageant program
Tickets are $7 for the semifinals, $10 for the finals or $15 for both.

For more information and contestant bios, CLICK HERE

Low Choline Level in Pregnancy Tied to Birth Defects

2009-08-15T08:19:00.000-07:00

Anencephaly, spina bifida linked to nutrient found in foods, study shows

Teaser:

The Stanford University School of Medicine team compared pregnancy blood samples from 80 women who gave birth to children with anencephaly and spina bifida to pregnancy blood samples from 409 women whose infants had no birth defects.

The results showed that choline levels were linked to risk of neural tube defects. Choline is found in egg yolks, soy, wheat germ and meats.

Gratitude

2009-08-13T16:52:00.000-07:00

Mark Smith has his latest installment up at Wheelchair Diaries.

Teaser:

Here’s a provocative question for you: How is it possible that one with a severe disability excels well beyond his or her peers, including those without disabilities?

For example, how does one explain a college student with severe cerebral palsy, who can’t speak or write on his or her own, graduating college, magna cum laude? Or, how does one explain a quadriplegic who rises through the ranks of the banking world to become a vice president? Or, how does one explain how one born without arms goes on to become a world-renown musician? . . .

This question intrigued me as I thought about my own acquaintances over the years who’ve had severe disabilities but excelled beyond most others – and I wondered if there was a common trait that they shared, a trait that many others may not practice, that’s all but guaranteed their success?

As I went back and analyzed the character traits of my successful acquaintances and peers with disabilities, I saw a clear trend toward their all sharing overall outlooks of dedication, perseverance, and optimism; however, they all shared a far greater form of everyday empowerment than most: Gratitude.

Miss Wheelchair America

2009-08-12T09:46:00.000-07:00

Here is a trailer for the upcoming documentary

Blue Food Dye Might Help Cure SCI

2009-07-28T09:51:00.000-07:00

An Interesting Article in Wired Science.

Teaser:

The same blue food dye that gives your Gatorade its turquoise tint and turns your tongue a peculiar shade of purple might also protect your nerves in the case of spinal cord injury.

By lucky accident, researchers discovered that the commonly used food additive FD&C blue dye No. 1 is remarkably similar to a lab compound that blocks a key step in nerve inflammation. When rats with spinal cord injury were given an infusion of blue dye, they recovered much faster than rats that didn’t get the treatment.

Sammy Rhodes

2009-07-27T04:30:00.000-07:00

Here is an interesting article about 9-year-old Sammy Rhodes who doesn't let Spina Bifida slow her down.

Teaser:

Sometimes people can inspire others by just being themselves.

That is exactly what 9-year-old Sammy Rhodes effortlessly does every day of her life.

Born with myelomeningocele spina bifida, where part of the spinal cord is on the outside of the body, Sammy was not expected to ever be able to walk, let alone ride horses, swim and play golf.

Yet that is exactly what this energetic, sports-crazed little girl does with her free time -- often overcoming obstacles and developing her own techniques to do them, because, for Sammy, not playing is not an option.

Only Sky Beneath Your Feet

2009-07-24T03:10:00.000-07:00

Visit msnbc.com for Breaking News, World News, and News about the Economy

Learning to Walk: Better Late Than Never

2009-07-14T13:29:00.000-07:00

The following story is from TriCities.com:

Ricky James

2009-07-11T19:08:00.000-07:00

Ricky James in a motocross professional.

Ricky James is paralyzed from the chest down.

RICKY JAMES 824.COM

How Preemie Moms are Chosen

2009-07-11T18:50:00.000-07:00

Adapted from Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."

Welcome to Holland

2009-07-11T18:47:00.000-07:00

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Top 10 Things Your Occupational Therapist Wishes You Knew About SB

2009-07-08T14:38:00.000-07:00

“ What should a parent or patient know?”
Submitted by an Occupational Therapist at Rady Children's Hospital, San Diego

Occupational Therapy Top 10 List

1. Occupational Therapists encourage and teach children to be independent in their activities of daily (ADL’s) living ie. Dressing, bathing and toileting.

2. It’s important for parents of a child with spina bifida to motivate the child to perform ADL’s as independently as possible.

3. Provide children with Occupational Therapy early on in life assisting in early education in development, upper extremity strength, and parent education for increased Independence.

4. Occupational Therapists will evaluate the family’s home and make recommendations for home equipment and any adaptations needed to enable the child to be more successful in their daily activities.

5. Skin breakdown is highly common in the spina bifida population. Patent and parent education is valuable in preventing skin issues. It’s important for a patient to perform frequent weight shifts throughout the day and perform thorough skin checks daily.

6. Pressure care is important given these risk factors: reduced lower limb sensation, reduced mobility, incontinence, and possible reduced lower limb circulation.

7. Children in school may need an Occupational Therapist to help to problem solve ways to manage their daily routine with ease or figure out news to cope with problems or to master a new skill.

8. Maintaining good arm and hand strength is important for mobility whether that is in a wheel chair or with crutches, and with transfers, and maintaining Independence in self-care skills.

9. Occupational Therapists can also assess a child’s feeding skills, hand-writing and sensory processing skills, if needed.

10. Occupational Therapists asses the child’s ability to self feed, if there are any oral aversions, signs of reflux issues, feeding preferences and assist parents in modifying feeding schedules.

Legal Resources

2009-07-08T13:06:00.000-07:00

Estate Planning for Children with Special Needs

California: Physician Referrals

2009-07-06T13:23:00.000-07:00

SAN DIEGO

Care Centers:

Mary Birch Hospital for Women

We received excellent care at Mary Birch. The staff was kind and helpful from the moment we went in for an emergency C-section. Our daughter was in the NICU for 11 days after birth and the nurses there were a godsend!

Neurology:

Physician: Dr. Michael Levy

Care Center: Rady Children's Hospital

Phone: (858) 966-8574
Dr. Levy handled our daughter's shunt revision when she was 6 months of age and four months later, we have not had any troubles with it. in addition, Dr. Levy suggested a fairly new procedure called a Third Ventriculostomy which may end up making Annie's shunt unnecessary. Dr. Levy was kind and professional and we have the utmost faith in his abilities!

Physician Referrals

2009-07-06T13:17:00.000-07:00

Some call Spina Bifida patients the "Canaries in the coal mine" of the medical world. The reason being, that people with Spina Bifida have to avail themselves of so many doctors in so many medical disciplines that if there is a problem with a particular medical center, that problem may very well show up amongst the SB community first.

In an effort to help you seek out the best care possible, we are compiling a list of medical professionals that have delivered outstanding service and care to people within the SB community.

If you have medical professional that you would like to recommend, please email the details to matthew.m.linden@gmail.com .

Physicians by State:

CALIFORNIA

Maryland: Upcoming Events and Programs

2009-07-06T13:03:00.000-07:00

BALTIMORE

3rd Annual Festival of Tees Golf Tournament
9/22/09 - 9am to 9pm

Miniature golfers of all ages will be putting their best putt forward at the 3rd Annual Festival of Tees golf tournament. All funds raised from this golfing event will benefit children with cerebral palsy and spina bifida at the Kennedy Krieger Institute.

The Festival of Tees is Baltimore’s only national qualifier miniature golf tournament. Two spots are up for grabs once again this year in the National Harris Cup Miniature Golf Finals in New Jersey. The best two players in the game will be one step closer to winning $10,000 in prize money and claiming the sports most coveted award, The Harris Cup.

Registration is $25 and participants can register at ParTee Golf in Perry Hall until August 21st.

410-254-PUTT (7888)
jessie@profilespr.com
www.partee-golf.com

Nebraska: Support by City

2009-07-04T08:11:00.000-07:00

GOTHENBURG, NEBRASKA

Suzie Wahlgren
rosssuzie2@hotmail.com
my son Grant has SB. I am willing to be contacted by whoever I might be able to help.

www.totsites.com/tot/caseyssib

AFP Test / Genetic Counseling / Amniocentesis

2009-07-02T10:02:00.000-07:00

For most parents, the first indicator that something may be unusual with their pregnancy is found through an alphfetoprotein (AFP) Test.

About.com has an excellent explanation of the AFP test.

Once an AFP test comes back abnormal, mothers are usually given a more advanced ultrasound that will attempt to look for visible irregularities in the development of the child.

Physical irregularities seen through an ultrasound are usually the first confirmation that a child may have Spina Bifida or other complications.

1) The AFP test indicates that something may be wrong.

2) Irregularities seen in an ultrasound indicate that something is structurally wrong. in other words, there are physical abnormalities that can be seen.

Usually, at this point, the mother is referred to a genetic counselor. The genetic counselor is usually a third party independent of any of the doctors you have seen. While a GC is not a doctor, they have been trained to explain the AFP and ultrasound results to you in plain, simple and unbiased language. Your GC should be able to explain what the AFP and ultrasound results mean and what they don't mean. Your GC will help you to decide whether or not you would like to have an amniocentesis done.

Wikipedia has a good article on Amniocentesis.

While an ultrasound can help to determine if there are physical irregularities that can be seen, an ultrasound and AFP test do not determine conclusively if there are genetic / chromosomal abnormalities such as downs syndrome.

While an amniocentesis will give you more information, it is not without it's risks either. Your GC should be able to help you weigh the pros and cons of an amnio given your unique set of circumstances.

We Are All Disabled - Mine is Just Visible

2009-07-01T15:13:00.000-07:00

The end is the best part - worth the wait!

Wheelchair Bodybuilding.com

Body Building

2009-07-01T15:02:00.000-07:00

PROGRAMS:

Wheelchair Bodybuilding.com

Just In Case You Missed It

2009-06-30T19:07:00.000-07:00

Lacy, over at Our Journey (one of the blogs in the margin to the right) has a beautiful "Day in the Life" slide show featuring 9-month-old Autumn all set to Welcome to This World by Renee and Jeremy.

Great Stuff!

Contribute to the SB Resource Guide

2009-06-30T16:55:00.000-07:00

Our goal is to become the most comprehensive source of information concerning Spina Bifida in the world.

Crazy, huh? The only way we can do it is with contributions from our global community.

If you find a link that is broken or outdated- let us know.

If you discover a great resource or program - let us know.

If you have an upcoming SB-related event - let us know.

If you have a story you want us to link to or a story you would like us to post - let us know.

If you can think of ANYTHING ELSE - LET US KNOW!

This is not OUR website - it's YOUR website. It exists for every person who has been effected by SB and the more you contribute, the better it will get!

Blessings!

Matt

Matthew.m.linden@gmail.com

Programs Operating in Multiple States

2009-06-30T16:08:00.000-07:00

4 Paws for Ability Service Dogs
Do you know of a disabled person who needs a service dog? 4 Paws for Abilities has few restrictions for acceptance and works with most families within the boundaries of our organization's ability to train and place the type of dog needed. We say "yes" when many more traditional assistance dog placement agencies say "no."

Canine Companions for Independence
The most advanced technology capable of transforming the lives of people with disabilities has a cold nose and a warm heart. Canine Companions for Independence® provides highly-trained assistance dogs for children and adults with disabilities, free of charge.

Caringbridge

Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.

Hole In The Wall Camps

I Was Born To Win

Music is one of the most powerful influences of our emotions and subconscious. With over 100 songs to choose from, your child will absolutely benefit over and over. Click on any CD below and choose your child's name to hear for yourself.

KEEN (Kids Enjoy Exercise Now)

KEEN is a national, nonprofit volunteer-led organization that provides one-to-one recreational opportunities for children and young adults with mental and physical disabilities at no cost to their families and caregivers. KEEN's mission is to foster the self-esteem, confidence, skills and talents of its athletes through non-competitive activities, allowing young people facing even the most significant challenges to meet their individual goals.

Littlest Heros Project

Matches a professional photographers with special needs families free of charge

Local Spina Bifida Association Chapters

For information on programs in your area.

Spina Bifida Association List of Youth Camps

They Will Surf Again

Offering people with SCI on both the West and East Coast the opportunity to surf

United Spinal Association's List of Progams

Wheelchair Bodybuilding.com

Publications

2009-06-30T15:52:00.000-07:00

Action Online

Magazine produced by the United Spinal Association

Insights into Spina Bifida

Magazine produced by the SBAA

Chloe Magazine

Complex Child Magazine

Complex Child is a monthly online magazine written primarily by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.

Living with SB

2009-06-30T15:45:00.000-07:00

Mount Sinai Health and Wellness Series
Topics include: Healthy Eating and Weight Management / Exercise and Sports & Recreation
/ “The True Nature of Intimacy” by Gary Karp / Intimacy and Sexuality after SCI: Male and Female Panels / “Freeing Minds, Opening Hearts and Igniting Action” by Scott Chesney /Reinventing Yourself after SCI

Spinal Stips

Tips and tricks for life in general from people with spinal cord injuries

Online Chats

2009-06-30T15:41:00.000-07:00

If you know of an active and vibrant online chat for people effected by SB, please e-mail the link to matthew.m.linden@gmail.com

Spina Bifida Kids at Babycenter.com

A bulliten board where expectant parents as well as parents of young children with SB can go for parent-to-parent support, encouragement and information

Daily Strength
Another bulliten board where expectant parents as well as parents of young children with SB can go for parent-to-parent support, encouragement and information

CafeMom
Our children are special and beautiful and sometimes what they have to go through is scary. They are our inspiration and our happiness. Their appointments and medical issues can be overwhemling, and although every child is different, we have a lot in common. Come and ease your mind at similar experiences shared by other Moms of these exceptional children.

Yahoo Groups

There are many SB-related goups on Yahoo - just go to Yahoo Groups and type in "Spina Bifida" in the search bar. One of the main SB Groups is Spina Bifida Central.

Facebook

There are many SB-related goups on Facebook - just go to Facebook, set up an free account and type in "Spina Bifida" in the search bar

Disaboom

Disaboom is a website dedicated to connecting people with disabilities.

Top 10 Things Your Physical Therapist Wishes You Knew About SB

2009-06-30T14:58:00.000-07:00

“What should a parent or patient know?”
Submitted by a Physical Therapist at Rady Children's Hospital, San Diego

Physical Therapy Top 10 List

1. Children with spina bifida should be monitored for appropriate development and be provided with physical therapy, gym resources, and adaptive PE while in school, as applicable.

2. Physical Therapists encourage children with spina bifida (within the limits of safety and health) to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care.

3. Mobility is a key factor in independence. Kids with spina bifida may use any (or a combination) of these forms of mobility:
- Walking
- Walking with braces
- Walking with an assistive device such as a walker or forearm crutches
- Use a manual wheelchair (one the user pushes)
- Use a power assist wheelchair (one the user pushes, that also has a motor)
- Use a power wheelchair

4. Being involved in regular physical activity is very important for fitness and to prevent obesity. Gaining too much weight can cause the following:
- loss of mobility, including ability to transfer, and loss of independence
- development of arthritis in your legs, arms and spine
- increased work of breathing
- loss of energy

5. For children who have difficulty exploring their environment due to mobility deficits, it is important to provide them with the therapy and equipment to facilitate these activities, in order to help with cognitive and sensory-motor development.

6. San Diego County has many adaptive sports programs. Some examples are:
- San Diego Adaptive Sports Foundation
- City of San Diego Therapeutic Recreation Services
- City of Chula Vista Parks and Recreation Department

7. Children with spina bifida must carefully follow sensory precautions. A child with spina bifida may have sensory deficits. This means that he/she may not be able to feel temperatures (hot/cold,) pain, or pressure, or have an idea where his/her legs are without looking at them. Water temperature for bathing, skin integrity, and leg position must be closely monitored.

8. Skin problems are common in the spina bifida population, especially in wheelchair users.

9. What skin problems occur and why? The major problems are:
- poor mobility
- reduced sensation from impaired nerves
- naturally thin skin
- poor circulation
- difficulty reaching down to clip toenails and staying clean
- poorly fitting or maintained shoes, braces, wheelchairs, and wheelchair cushions.

10. What can be done to lower the risk of skin problems?
- Exercise and maintain mobility
- Weight management
- Regular weight shifts when sitting, and check entire body/skin for telltale signs of a pressure sore.
- Attend Spinal Defects Clinic. The clinic staff will make sure that shoes, aids and wheelchair are OK.
- When you get a skin problem, see your doctor immediately. Never delay.

Mum's Victory Over Spina Bifida

2009-06-29T16:38:00.000-07:00

After a 22-year battle with spina bifida, Amanda Richter says she is ready to declare victory.

Amanda said the joyous birth of her first child, Hailee, last November finally extinguished the mindset that she was handicapped and would not lead a normal life.

During Amanda's infancy it was believed she probably would not go to school, marry, have children or be able to live independently - but today the beaming mum has accomplished it all.

LINK HERE

New Jersey: Upcoming Events and Programs

2009-06-29T07:53:00.000-07:00

EASTERN NEW JERSEY

Wheelchair Medic

Challenger Little League

2009-06-28T08:15:00.000-07:00

Check out this great story from Mobile, Alabama:

Alabama: Upcoming Events and Programs

2009-06-28T07:21:00.000-07:00

MOBILE

Challenger Little League

Connecticut: Upcoming Events and Programs

2009-06-28T07:18:00.001-07:00

SOUTHWEST CONNECTICUT

Wheelchair Medic

North Carolina: Upcoming Events and Programs

2009-06-28T07:08:00.000-07:00

YOUTH CAMPS

Camp Victory Junction

Missouri: Upcoming Events and Programs

2009-06-28T07:03:00.000-07:00

YOUTH CAMPS

Camp Mitiog

New Jersey: Upcoming Events and Programs

2009-06-28T05:05:00.001-07:00

EAST NEW JERSEY

Wheelchair Medic

Golf Equipment

2009-06-27T14:42:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Check out this promo video for a powered chair from Parabasetec:

Life Without Limits

2009-06-27T05:10:00.000-07:00

Nick Vujicic was born without limbs. The doctors were unable to determine the cause.

Nick Vujicic now travels the world as a sought-after inspirational speaker.

Customized Music for Your Little One

2009-06-27T04:57:00.000-07:00

I Was Born To Win has a collection of inspirational children's music customized with your child's name IN THE SONGS.

Cool Stuff!

Neobladder may restore function in neurogenic bladder in patients with spina bifida

2009-06-27T04:09:00.000-07:00

Score another point for regenerative medicine.

At the AUA annual meeting here, researchers reported 1-year data on augmenting the bladders of patients with spina bifida using neobladder developed from the patients' own cells. In a phase II, prospective, multicenter trial, clinical improvement after implantation with the neobladder material was noted in some patients who consequently were able to cycle their bladder.

LINK HERE

Connecticut: Support by City

2009-06-26T07:29:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Travel Resources

2009-06-26T06:58:00.000-07:00

Our goal here is to provide you with the most up to date travel tips, tricks and resources.

If you have tip, trick or resource you would like to share, e-mail it to matthew.m.linden@gmail.com.

Able to Travel.com

United Spinal Association

Why "Extraordinary"?

2009-06-25T14:56:00.000-07:00

All sorts of labels are in circulation regarding the disabled:

"Disabled"

"Handicapped"

"Crippled"

"Differently Abled"

"Special Needs"

As compared to the rest of the population:

"Normal"

Meaning everyone who is not fully-physically-functional is "ab-normal"

I prefer the terms "Typical" as in "just like everyone else", and "Extraordinary" as in "Someone special."

Disabled people the world over wake up to unique physical challenges every single day. They are truly extraordinary.

Frequently Asked Questions

2009-06-25T14:52:00.000-07:00

Where can I find SB information not on this site?

Why a Blog?

Why the term "Extraordinary"?

Why a Blog?

2009-06-25T14:46:00.000-07:00

Because we don't have any money and blogger is free.

Seriously, think about it, blogger is so easy to use that almost anyone with a reliable connection to the I-net can do it.

That being said, our dream is to have a legit web presence one day.

Your gifts will get us one step closer to that goal.

Pennsylvania: Upcoming Events & Programs

2009-06-25T11:45:00.000-07:00

PHILADELPHIA

United Spinal Association’s Kids Sports Spectacular - 8/22/09
On Saturday, August 22nd, 2009 United Spinal Association’s Kids Sports Spectacular returns to the Comcast Spectacor/Wachovia Complex in Philadelphia, Pennsylvania for an action packed day of recreational events, activities, and dreams that come true for kids who are wheelchair users.

How Stuff Works

2009-06-25T10:48:00.000-07:00

Aaron Fotheringham was recently featured in a Discovery Communications commercial:

How does he do it? Details here . . . .

Kansas: Support by City

2009-06-25T10:39:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

KANSAS CITY

Spina Bifida, Kansas City

Kansas: Upcoming Events & Programs

2009-06-25T10:34:00.000-07:00

YOUTH CAMPS

Camp Victory Junction

KANSAS CITY

The Blue Knights Kansas VIII Dice Run for Spina Bifida – July 11

The Legion Riders #48 Dice Run for Spina Bifida – August 29

OSAGE

Midnight Swim for Camp MITIOG - July 17th, 2009

Texas: Support by City

2009-06-25T09:49:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

AUSTIN, TEXAS

Adrienne Trigg
scottandadrienne@aol.com
Hayden L5-S1, VP shunt, Chari II/IV (2/24/09)
www.texastriggs.blogspot.com

MIDLAND, TEXAS

Lacy Williams
llwilliams8@grandecom.net
Lacy, Mom to Madison(10), Gage(4), and Autumn(9/22/08) w/SB (L4,L5), shunt, AC II Malformation w/central apnea, trach & vent and one of the greatest joys in my life!!!
www.autumn.haleydean.com
www.lacywilliamsfamily.blogspot.com

Marketplace

2009-06-25T07:29:00.001-07:00

Our goal here is connect you with people who are not letting their disability stand in the way of having a career, building a business or following their passions.

Check out their sites and drop a few bucks - it is one of the best ways to support these Extraordinary individuals within our community.

Heart Dog Studios

Recently returning to San Diego from a stint of Los Angeles living, Tamandra is pursuing her blossoming art career with passion and heart, always striving to communicate meaning and emotion. Dogs are her primary focus, because they represent for her the perfect manifestation of unconditional love. "The love that dogs share with us in such abundance is a gift. It's a gift that heals. It truly is medicine for the soul." Her adoration comes through in vivid, vibrant colors. And whether human or animal, Tamandra's depiction of the eyes (seemingly effortlessly) reveals the soul and spirit of her subject--as well as so much of her own.

Pennsylvania: Support by City

2009-06-24T08:02:00.001-07:00

UPCOMING EVENTS AND PROGRAMS

Elkland, Pennsylvania

Erica Hoke
reekienjaymo@yahoo.com
Mother of Roman Abel- 9 weeks, L2-L5, VP shunt, possible ACMII and a vascular ring (not sure if the VR is related to SB or not..)

Louisiana: Support by City

2009-06-24T07:37:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

NATCHITOCHES

Mariann and Chris Wilson
mariannwilson@bellsouth.net
Sons Jack and Woody (twins; both with SB around L4/5; born 3/9/09; VP shunts; no cathing yet
www.facebook.com/mariann.wilson

Wisconsin: Support by City

2009-06-24T07:20:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

MILWAUKEE

Amy Berg
mymurphdog@yahoo.com
Charlie was born 4/30/09 S2-S4, VP shunt with our first revision scheduled for tomorrow:( No cathing yet. Moves legs and kicks like a champ.

New York: Support by City

2009-06-24T07:12:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

RICHFORD, NEW YORK

Kelly LaPorte
kalaporte@gmail.com
My daughter, Madelyn, was born with Spina Bifida L4/L5, Hydrocephalus
(shunted), Partial Trisomy 9q, and Partial Agenesis of Corpus Colosum.
She is now 2 1/2 years old, and is just starting to take some steps
in her walker. She is cathed every 3 hours.

ROCHESTER, NEW YORK

Holli Rissberger
hrissberger@gmail.com
Mom to twins born May 2nd, 2009. Alex has Spina Bifida L1, shunt, cathing, dislocated hip and the joy of my life.
www.ourdoubleblessings.blogspot.com

Illinois: Support by City

2009-06-24T07:06:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

CHICAGO

Megan Meinhardt
megano2@yahoo.com
Nellie was born on April 12, 2004 with SB...unknown to us until her birth. Her defect location is L5/S1. She's doing great aside from her mobility delays. She is the light of our lives.

Blanca Jara

Bilingual (English / Spanish)
bejara@cookcountycourt.com
Mom to Luis Jara, SB. Not sure of the level, no cathing yet. Yes to the shunt.

Megan Meinhardt
megano2@yahoo.com
Nellie was born on April 12, 2004 with SB...unknown to us until her birth. Her defect location is L5/S1. She's doing great aside from her mobility delays. She is the light of our lives.

Inspiration from Adults with SB

2009-06-23T07:55:00.002-07:00

=Under Constrution=

Inspiration from Teens with SB

2009-06-23T07:55:00.001-07:00

= Under Construction=

Inspiration from Parents of Children with SB

2009-06-23T07:54:00.000-07:00

Greyson just continues to do so well and we are amazed by him every day! If we only knew what life would be like with him, we could have saved ourselves A LOT of worrying in those months after we found out about the spina bifida. Life is so good. :)
- Leigh

"I admit fully in having my faith tested at times while we have been on this journey, watching my babies struggle with every breath and fighting for life. In my heart, I know He is watching over them, and us. Both of my sons have overcome so much just to be here. They keep fighting and surmounting all the obstacles in their way. Their strength and resilience humbles me and I am so honored that I was chosen to be their mom!"
- Holli

WELCOME TO HOLLAND by Emily Perl Kingsley.

HOW PREEMIE MOMS ARE CHOSEN Adapted from Erma Bombeck

Utah: Support by City

2009-06-23T05:05:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

SPANISH FORK

Amanda Mateus
kamikazial@hotmail.com
Zach is almost 13 months old. His SB is around L2-L3. He has a shunt and has had one revision. He is moving all over the place by rolling and pushing and is learning to army crawl. He is very opinionated and knows what he wants. He is a very happy boy and a such a joy in our home.
zacharysstory.blogspot.com

California: Support by City

2009-06-22T15:37:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

BAKERSFIELD

Jennifer
Jenniferlynnki@hotmail.com
I am a mother of three wonderful children, one of whom was born with Spina Bifida. I was shocked when I found out when I was 18 weeks pregnant. I cried for days. One thing that changed my outlook was the ability to talk to a mother who went threw what I was going thru and I got to see a child who had what my daughter did. I still have that memory 2 years later. I would love to let parents know that they are not alone, and neither are their kids.

CENTRAL VALLEY (FRESNO AREA)

Michele Hays
countrybuyer1@hotmail.com
Jackson (3) L3-S1 VP shunt, cathing twice a day, club feet, dislocated hips, ACM II. Working on walking with a walker.

IRVINE

Scott and Karlee Leyva
karlee.m.leyva@gmail.com
Everlee 02.02.09 * SB S2-3, VP Shunt (5 revisions), Cath 3x's daily, ACII and smiles non stop!!! We have two daughters, Aubree is 3 and Everlee is almost 5 months. Everlee has SB and Hydrocephalus. She is currently on her 6th shunt and is cathed 3x's a day. Besides a few set backs she is doing awsome! We have been out of the hospital for over a month, yeah! She rocks with all of her therapy. Once we get settled in the new house I will be better about keeping our blog updated.
http://everleeannleyva.blogspot.com/

SAN DIEGO

Jacqueline Pochop
jacpochop@gmail.com
Hunter, who is now four years old, was born with SB L4-S2, Hydrocephalus w/shuntX3, ACII, club feet, g-tube, tracheostomy, and more! In addition to Hunter we have 3 daughters (10, 14, & 17) and 19 year old son. He is a pro in his wheelchair and has already told us he is going to do backflips in it; in addition to playing wheelchair basketball and baseball. He is also getting pretty good at walking with his walker and braces (AFO’s & KAFO’s). Hunter is a hero to many and an incredible inspiration and we honored to have been chosen as his parents.

Bess Moore
bessleland@aol.com
760-231-5270

Matthew Linden
matthew.m.linden@gmail.com
Father of Annabelle Lucille Linden born 8/7/8 with T5-level SB, Hydro, VP Shunt and Bilateral clubbed feet
http://www.thedawgrun.blogspot.com/

Holly Linden
holly.m.linden@gmail.com
Mother of Annabelle Lucille Linden born 8/7/8 with T5-level SB, Hydro, VP Shunt and Bilateral clubbed feet
http://pushontildawn.blogspot.com/

Erika Atkinson
e.casco@yahoo.com
Our son Nicolas has SB S2-S4 . No shunt, Walking independently, Cathing 7 per day, Reflux level 4, and we are doing everything we can to save his kidneys.

TURLOCK, CALIFORNIA

Rachelle
=e-mail to follow=
Nathan and Brianna were born March 4, 2009. Brianna has Spina Bifida (L3?), VP shunt, cathed 3x's day...she's our little miracle!

North Carolina: Support by City

2009-06-22T15:27:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

HUBERT

Lori Smith
smithnc@embarqmail.com
Daughter – Emma Grace born 11/21/2008 SB L5-S1, ACMII asymptomatic, Cathed 4xs, no shunt.

SALISBURY

Crystal Hodgson
kris52720@yahoo.com
Ethan was born 4/6/07 SB around L1, Shunt, ACMII, club foot, hips out of place, in a wheel chair, cath 3x day (going in for 9th surgery on July 5th)

Extraordinary Fashion

2009-06-22T14:47:00.000-07:00

With various disabilities can come some unique fashion opportunities. From easy-on-easy-off, custom fit clothing to bling for your mobility gear.

If you know of a good source, website or idea, e-mail it in to matthew.m.linden@gmail.com and we will post it here!

Izzy Camilleri Adaptive Clothing

Lega Wear
Create your own clothes, completely after your own taste! Easily click your way forward to something that suits you in colours and in design.

California: Upcoming Events and Programs

2009-06-22T14:15:00.000-07:00

TASK

Team of Advocates for Special Kids (TASK) is a nonprofit charitable organization whose mission is to enable individuals with disabilities to reach their maximum potential by providing them, their families and the professionals who serve them with training, support, information, resources and referrals, and by providing community awareness programs.

CAMARILLO

“Planning for the Future of Your Child or Dependent with Special Needs”
This is an interactive workshop on the legal and financial issues involved in planning for the future of a child or other dependent with special needs.

Date: Tuesday, July 21st
Time: 4:00-5:30 PM
Location: Camarillo Healthcare District
Address: 3639 E Las Posas Bldg E
RSVP to: Joan Moore at 805-650-5993
No Fee

CHULA VISTA

City of Chula Vista Therapeutic Recreation Programs
The Therapeutics Recreation Section offers a wide range of activities for persons with developmental disabilities and/or physical disabilities.

MAMMOTH LAKES

They Will Ski Again - Feb, 09

OCEANSIDE

Together We Grow

Child care for both typical and special needs children

PASADENA

“Planning for the Future of Your Child or Dependent with Special Needs”
This is an interactive workshop on the legal and financial issues involved in planning for the future of a child or other dependent with special needs.

Date: Friday & Saturday, August 14th & 15th
Time: 8:30AM-5:00PM, Registration begins at 7:30am each day
Location: Pasadena Convention Center
Address: 300 E Green St.
Register Online at www.autism-conferences.com
See website for fees
Helen will be speaking Saturday from 3:30-5:00PM

SAN DIEGO AREA

Kids on the Block

An educational Puppett Troupe addressing (in part) the disabled community

San Diego Adaptive Sports Foundation

League sports offered year round include basketball, indoor wheelchair soccer, football and rugby. Practices are held twice a week at Municipal Gymnasium in Balboa Park and Parkway Gymnasium in Chula Vista.

San Diego Therapeutic Recreation Services
The City of San Diego Park & Recreation Therapeutic Recreation Services (TRS) program provides sports, recreation, leisure and outreach services to San Diegans with physical, mental and emotional disabilities.

San Diego Padres Sports Camp - 9/21/09
for Children with disabilities
Friday, August 21, 2009
10:00am-12:00pm
Engel Family Field at San Dieguito Park
1628 Lomas Santa Fe Drive
Del Mar, CA 92014

Together We Grow

Child care for both typical and special needs children

SB of SD Annual Picnic - 8/15

SB of SD Meeting - 9/12/09

SB of SD Meeting - 11/14

SB of SD Annual Christmas Party - 12/12

WHAT'S NEXT
HEY TEENS! Develop leadership and team-building skills - get to know successful, professional adults with disabilities! Learn, interact, socialize

SANTA MONICA

“Planning for the Future of Your Child or Dependent with Special Needs”
This is an interactive workshop on the legal and financial issues involved in planning for the future of a child or other dependent with special needs.

Date: Saturday July 18th
Time: 10:00AM-Noon
Register Online at commed.smc.edu/summer2009
Location: Santa Monica College, Bundy Campus
Address: 3171 S Bundy Dr. Room 216
Fee: $45

New York: Upcoming Events and Programs

2009-06-22T08:49:00.000-07:00

Our goal here is to provide you with upcoming events in your area. We will post and update events as we discover them however we are dependant upon our readers to send us their event information.

If you have an upcoming event you would like posted, please e-mail it matthew.m.linden@gmail.com.

LONG ISLAND, NEW YORK

United Spinal Association's 2009 Independence Expo: 6/27/9-6/28/9

SOUTHEAST NEW YORK

Wheelchair Medic

Upcoming Events & Programs by State

2009-06-22T08:44:00.000-07:00

Our goal here is to provide you with upcoming events and programs in your area. We will post and update events as we discover them however we are dependant upon our readers to send us their event information.

If you have an upcoming event or program that you would like posted, please e-mail it matthew.m.linden@gmail.com.

PROGRAMS THAT OPERATE IN MULTIPLE STATES

UPCOMING EVENTS BY STATE

ALABAMA

CALIFORNIA

CONNECTICUT

FLORIDA

KANSAS

MARYLAND

MISSOURI

NEW JERSEY

NEW YORK

NORTH CAROLINA

PENNSYLVANIA

Florida: Upcoming Events & Programs

2009-06-22T08:41:00.000-07:00

ORLANDO, FLORIDA

United Spinal Association's 2009 Independence Expo: 8/7/9-8/8/9

Severn, Maryland

2009-06-22T06:58:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Melinda Osterhout
melinda_osterhout@yahoo.com
I have a 5 year old and a 2 year old with sb. He is L3 with a shunt. Learning to use walker and soon to get a wheelchair as well. Cathed every 3 hours.

Independance, Missouri

2009-06-22T06:48:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Christina Benson
modlin@comcast.net
Mia 9/24/07 - Lower Lumbar/Sacral, Shunt (no revisions), resolved kidney reflux, no cathing, wears AFOs and working on standing and walking.
www.sbkc.org

Softball Equipment

2009-06-22T06:21:00.004-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time.

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Colours Wheelchairs

Tennis Equipment

2009-06-22T06:21:00.003-07:00

Rugby Equipment

2009-06-22T06:21:00.001-07:00

Soccer Equipment

2009-06-22T06:18:00.000-07:00

Cycling Equipment

2009-06-22T05:53:00.000-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time.

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Cycles

Snow Skiing Equipment

2009-06-22T05:52:00.000-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time..

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Skis

Beach Equipment

2009-06-22T05:50:00.001-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time.

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Wheelchairs

Basketball Equipment

2009-06-22T05:48:00.000-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time.

UPCOMING EVENTS AND PROGRAMS

EQUIPMENT

Colours Sport Wheelchairs

SB Myelomeningocele: Wheelchairs

Sports Equipment

2009-06-22T05:46:00.000-07:00

Our goal here is to link you with the latest programs and most advanced equipment available. This listing will grow, change and expand over time.

UPCOMING EVENTS AND PROGRAMS

In addition to the links here, United Spinal Association has a listing of sports equipment and programs.

Beach

Body Building

Cycling

Golf

Rugby

Snow Skiing

Soccer

Softball

Tennis

Equipment Resources

2009-06-22T05:30:00.000-07:00

Our goal here is to provide you with information on the latest equipment for the SB Community. These lists will evolve, and change over time so check back with us!

GENERAL

United Spinal Association

Product reviews and links to various equipment resources

Sports Equipment

Zinger Ultralight Wheelchair Power System

CHILDREN'S EQUIPMENT

Equipment Catalogues for Children

Equipment Catalogues for School-Aged Children

Seating

Mobility

Therapy Equipment for Children

TEENS

Colours Wheelchairs

ADULTS

Colours Wheelchairs

Accessible Vehicles

American Driver's Alliance

Mobility Equipment for Children

2009-06-22T05:23:00.000-07:00

Our goal here is to link you with the most advanced mobility options available. This listing will grow, change and expand over time.

SB Myelomeningocele has a nice round-up of various mobility options for children.

For some of the hippest wheels around, check out the Colours site.

There's a new product out called the Power Pumper.

AmTryke has hand-powered tricycles.

Child Seating

2009-06-22T05:19:00.000-07:00

Our goal here is to link you with the most advanced seating options available. This listing will grow, change and expand over time.

SB Myelomeningocele has a nice round-up of various seating options.

Canton, Ohio

2009-06-21T16:10:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Michele Fescemyer
michguel@yahoo.com
Xavier is 18 months, was born with L4/5 Myelomeneciele, Hydrochcephalus, and Arnold Chiari II. He has a VP shunt that has had 2 revisions so far. He is also cathed every 4 hours and one left in through the night. He is just now showing an interest in walking and is now walking behind his push toys, along the couch, and holding onto 2 hands.

Cleveland, Mississippi

2009-06-21T16:03:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Jenny Kurts, mom to Bella age 7 and Wyatt 5 months old.
jennykurts@yahoo.com
Wyatt was born 01-02-09, had vp shunt and spine repair 24 hours later. Lesion was L5, he moves his legs but has no sensation from his knees down. He also has ACII, kidneys and bladder are normal now. would love to meet other parents.

Northern Iowa (45 Miles South of MN border)

2009-06-21T15:57:00.000-07:00

UPCOMING EVENTS AND PROGRAMS

Tami Ramon
tamijramon1979@yahoo.com
Twins: Michael SB / L5-S1 and Joshua born 1/29/08
Michael is army crawling, loves his Grandma more than anything (yes even his parents!), loves to eat and play.