3/31/12

The Free Wheel




http://youtu.be/U2u-T4Oc4_M

Action Trackchair




http://youtu.be/BbNnWhq3TwE

Don't Be Afraid to Get Second Opinions

SB is a complex condition and while each of your doctors will address their specific discipline (Orthopedics, Neurology etc) you, as a parent, will juggle them all. It was a surprise to me when I finally came to the realization that I am in charge of what is best for my daughter - not the doctors - they work for me.

If your aren't feeling good about what a doctor is telling you, ask questions - challenge them even. Doctors make a decent living - they should be able to explain and defend their recommendations to a parent in a way that makes sense. If you are not satisfied with the information you are receiving, get a second opinion and don't apologize for it.

No one is going to ultimately look out for the best interests of your child better than you. Don't be afraid to get second opinions.

Parents Note:

Here are some examples of when we have sought out second opinions:

Perinatologist: The perinatologist we were initially referred to creeped us out. We did not like the way she approached us and got the clear sense that she was actually pushing her values on us - values that we did not share. We asked everyone we knew for recommendations and found a WONDERFUL medical group that ultimately delivered our daughter.

Urologist: The urologist we were initially sent to rubbed me the wrong way. She seemed "put out" by my gentle (really) questions and at one point snapped at me during an exam. We asked our pediatrician for a new referral and ended up with a Urologist whom we greatly admired.

Orthopedics: We really like our orthopedic team however we want to explore all options when it comes to treating Annie's spine. Our orthos seem to have "their way" of doing things so we have made an appointment to take Annie to Shriners in LA for a second opinion. Again, we have no problem with our ortho team but for the sake of our own consciences we feel we need to get a friendly second opinion.

The Thorn


by Martha Snell Nicholson

I stood a mendicant of God before His royal throne
And begged him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, “But Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me.”
He said, “My child, I give good gifts and gave My best to thee.”
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face.

Special Needs Marriages

It is no secret that marriages involving a special needs child are under an additional amount of stress but, just like the way pressure creates diamonds out of coal, that added stress can make a marriage tighter, strong and more resilient going into the future. If marriage were a sport, then special needs marriages are performing at the Olympic level. The challenges are hard but the glory is immense.

With all that in mind, here are a few articles (and one or two of my own) that have been an encouragement to me. I hope they are an encouragement to you as well:


Thoughts on Life

While not marriage-related precisely, here are some of the ways in which being a special-needs dad has impacted me:


Keep Calm and Rock On: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6

3/29/12

What is a Latex Allergy?

Latex products are made with natural rubber. Hospitals used to rely heavily on latex products (such as rubber gloves) until they began seeing an increased allergic reaction to the use of latex with patients. Allergic reactions to latex come not only from contact with the latex product but also from inhalation of the latex powder that is usually present such as inside a rubber balloon.

Patients who spent the most time in hospitals and had the greatest exposure to latex seemed to develop the most severe reactions. Since children with SB spent a significant amount of time in hospitals by comparison to the typical population, the incidence of latex allergy in the SB population was high. For that reason, all children born with SB are presumed to have a latex allergy.

Most hospitals no longer use latex products and so there is a decrease in the number of SB children reporting allergic reactions to latex. While most hospitals are now safe, latex balloons are still prevalent and many dentist offices still use latex gloves. In addition, certain fruits (such as avocados) contain natural latex.

Further Reading:

How Does SB Effect Cognitive Abilities?

People with Spina Bifida run the full range of typical cognitive abilities . Some are straight "A" valedictorians and some are not. Special attention does need to be given to early development and special education if needed.

Children outside the womb develop abilities very similar to how their bodies develop inside the womb. First comes trunk strength and control, then arm, leg (crawling and walking) and head motor development followed by hand, feet, mouth and eye motor development.

Children have a hard time just skipping over these milestones. For instance, if a child does not have the trunk strength and control to sit up independently and they are constantly gripping their high chair for support, they are going to have a hard time developing the fine motor skills involved in feeding themselves (they don't have a free hand!).

Speech and sensory issues are also common in children with SB but with attentive parents and proper therapeutic and educational services many delays can be minimized if not overcome completely.

Table of Contents



- About the Author

Scout Bassett




http://youtu.be/NsFMgC581_Y

Recommended Reading


For Children

A Very Special Critter
In this wise and funny picture-book adventure, a special student joins Little Critter's class at school. The new student uses a wheelchair, and Little Critter is worried. Will his classmate be very different? Will the class know how to act around him? It's an honest, realistic look at ways kids deal successfully with the unknown -- mixed with a big dollop of Mercer Mayer humor for good measure.

This book will help parent and children ease the sometimes difficult transition from home to school of child with a disability. This is Timmy's first day of kindergarten and he realizes other boys don't use a catheter. Non helps him learn that using a catheter is just another way to go.

Right Under My Nose was created to help children with spina bifida understand their condition, discover new ways to enrich their lives and help their parents and caregivers answer many of the tough questions that arise.


For Speech and Language Issues

The Late Talker: What to Do If Your Child Isn't Talking Yet

Special Education


Rachel Scdoris




http://youtu.be/Qc6U1iDabI0

Jesse Billauer




http://youtu.be/lvFHkk_lCms

Home Free Home




http://youtu.be/5LN6T-wjDUk

Eureka's Freedom Tent




http://youtu.be/8236UrzUNbw

Travel: Virginia

Clemyjontri Park
Children with and without disabilities can play side-by-side sharing the fun, excitement and thrills in a playground unlike any other in Fairfax County.

Jessica Cox




http://youtu.be/b2IqpPSF9-U

Travel: Texas




http://youtu.be/0ho_PD8m2YQ

Wheelchair Accessory List


For More Wheelchair Accessories, browse the Wheelchair Accessories topic

1800Wheelchair.com
Cup holders and more!

Accessories for Snow

CoolHubcaps.com
Spoke guards for wheels.

Frog Legs
Frog Legs is the world-wide expert in wheelchair suspension. with over 14 years experience we manufacture the original and best wheelchair shock abosrbing caster forks avalible.

Volcanic Wheels
Light-up front casters

UnderGlow Wheelchair Light




http://youtu.be/ZxDkE1oFw50

Sara Reinertsen




http://youtu.be/-qMz0QwyqPw

Alistar Hodgson




http://youtu.be/0-eICA1e4a4

The Chariot




http://vimeo.com/4185586

Rick Hansen: Around the World in a Wheelchair




http://youtu.be/pEJGOzn9CqU

Conquest Wheelchair Motorcycle




http://youtu.be/ZYj-I2aC-SA

MV-1




http://youtu.be/IpYFqtqgHnA

Nippi Wheelchair Scooter




http://youtu.be/Z9dfQBBa8d4

ROTA Trike




http://vimeo.com/26455170

Robotic Wheelchair that Follows You




http://www.youtube.com/watch?v=3xXhnJuPlV4&feature=player_embedded

Smart Crutch




http://youtu.be/Fysu1v33QWU

Latest Technology List

GTcompello Wheelchair
The GTcompello wheelchair is a human powered tilting trike which allows paraplegics and quadriplegics with adequate hand and arm function to access road terrain for activities such as touring and racing.

No Limits Trike
The No Limits Trike is an add on to a manual wheelchair.

Travel: Montana

Yellowstone

Therapies

There are many types of therapeutic approaches to dealing with developmental delays and/or deficits. Here are some of the therapies commonly utilized by people with SB:

Physical Therapy deals with gross motor development. Some examples would include trunk strength, crawling, walking movement of arms and range of motion.

Occupational Therapy deals with fine motor skills. Some examples would include self feeding, eating, drinking, movement of the head, grasping with the hands, and writing.

Speech Therapy deals with not only expressive speech (speaking) but receptive speech as well (hearing and understanding).

Hippo Therapy uses horseback riding to address Physical Therapy, Occupational Therapy and Speech Therapy all at the same time.

Sensory Integration Therapy deals with sight, sound, touch, taste and smell. Some of examples of Sensory Integration Therapy would be exposing the child to different tastes, textures, sights, sounds and smells.

National Expos and Conferences

Abilities Expo
For the last 30 years, Abilities Expo has been the one show dedicated to educating and improving the lives of Americans with disabilities, senior citizens, families, caregivers, healthcare professionals and professional therapists. It has been the nation’s foremost event for companies to demonstrate their products and services to the largest community of end-users and industry professionals.

Independence Expo
Imagine having access to the most valuable resources and innovative products available to improve your independence and achieve your goals. United Spinal Association’s Independence Expo offers just that–– all under one roof and free for you to explore!

Spina Bifida Association of America National Conference
Through exceptional medical sessions, practical workshops, and memorable social events, the SBA National Conference is an exciting and informative event that has truly earned its place as the world’s premier conference serving the Spina Bifida community.

What Causes Spina Bifida?

The short answer is, "We aren't sure". Presently, there is no known cause for spina bifida although there are theories.

While women who give birth to a baby with SB are slightly more likely to give birth to another baby with SB, it is unclear whether SB has a genetic component making one woman more susceptible than another. Other factors include diet, medications and environment.

It is believed that certain medications present in the body during the first weeks of pregnancy may contribute to SB. The medications most cited are anticonvulsants and diabetes medications.

Additional possible causes often cited are: Obesity, being too hot during the first few weeks of pregnancy (such as a hot tub, hot shower, fever, electric blanket), and binge drinking during the first few weeks of pregnancy.

How can women decrease their chances of having a baby with SB?

1) Take at least .4mg of folic acid a day - even if you are not planning on getting pregnant.

It is estimated that the chance of spina bifida occurring can be reduced by up to 70% if women take folic acid supplements. It is for this reason that in 1998 the FDA began requiring that all enriched grain products in the US be fortified with folic acid.

The standard recommended supplement is .4mg (my wife's pre-natal vitamins contained .8mg - twice the recommended dosage). That being said, women who have had a child with spina bifida in the past are encouraged to take up to 5mg a day - more than twelve times the normal dosage.

For folic acid to be effective in reducing the occurrence of SB, a woman should be taking supplements at least three months before conception. For this reason, the Spina Bifida Association of America encourages all women of child bearing age, regardless of sexual activity to take Folic Acid supplements.

Some women have shown an inability to properly absorb Folic Acid. If you suspect you may have a problem absorbing folic acid, consult with your doctor.

2) If you are on any medications, find out now from your doctor if any of them may pose a threat to a pregnancy (even if you are not planning on becoming pregnant). By the time you realize you are pregnant - it may be too late.

3) Avoid extreme heat when possible. If you are lightheaded in the jacuzzi, shower, tub etc., you have over done it.

4) Of course, binge drinking is never a good idea - and now you have one more reason to add to the list.

5) Pay attention to your body - if you think you might be pregnant, start acting as if you are until proven otherwise. Those first three to four weeks are intensely critical to your baby's development.

Fetal Surgery

The Management of Myelomeningocele Study (MOMS) was a study completed in 2010 which determined that in-utero fetal surgery to repair SB could be beneficial. As you can imagine, it is not without risks.

The procedure is very new, so only a few hospitals in the United States perform it.

Your best source for information on fetal surgery is other parents who have had the procedure done.

This is a Facebook Group for those who have undergone fetal surgery for spina bifida, or are considering it... to offer support, answer questions, or just connect!

Here is a video from the Today Show regarding the MOMS study.

During Pregnancy

When expecting parents get the news that their child might have SB, one of the first thing parents want to know is what they can do RIGHT NOW to help their child. In terms of medical intervention, the only option is fetal surgery. Other than that, treat your pregnancy just as you would a typical pregnancy; eat right, get lots of rest and take care of yourself.


Outside of medical interventions, there are some other things you can do to begin preparing for your little one's arrival:

Have your OB/GYN Refer you to a Perinatologist
SB pregnancies are considered "high risk" and as such, many OB/GYNs do not have the training or equipment to properly manage an SB pregnancy. Perinatologists are specialized doctors who work with high risk pregnancies.

It is a wonderful community that will give you the support, encouragement and answers you need and want.

Chances are, you will want to start applying for various government programs once your little one has arrived. It is far easier to start assembling that information now than trying to scramble once your wee one is here.

Frequently Asked Questions

Will I be able to have a natural childbirth?
Due to the nature of Spina Bifida, most babies with SB are delivered via cesarean, usually a week or two before their due date.

Will I be able to see my baby once he/she is born?
Most likely. The hospital's main concern is to stabilize the mother and stabilize the child. That usually means mom gets a quick look and kiss before the baby is taken to the Neonatal Intensive Care Unit (NICU). Once mom is stabilized in her hospital room, she can be wheeled down to the NICU.

Will I be able to breastfeed my baby?
Most likely. Because the mother can't be down in the NICU 24 hours a day (she needs her rest too), most likely they will have you pump breast milk which will be given to the baby by bottle when mom is sleeping / eating etc.

Will we be able to have visitors in the NICU?
Maybe. Each hospital has different rules so you will want to check with them.

How long will my baby be in the NICU?
That depends on the severity of the baby's condition. Most likely mom will be discharged a few days before the baby is.

We live far away from the hospital, how will I be able to visit my baby once I am discharged?
Check with your hospital. Many hospitals (especially children's hospitals) have facilities where out of town parents can stay. Ronald McDonald Houses are a perfect example.

Parent's Note:
Our Annie was delivered via cesarian around 1pm . Mommy got a quick look and a kiss while the Drs were closing her (my wife) up. I (dad) walked with a team of nurses down to the NICU as they carried the wee one. Once my wife was closed, they wheeled her down to the NICU on a gurney so she could see the wee one once more. Then my wife was taken to her room where she was required to wait twelve hours before she could eat solid food. Once she proved she could eat solid food (she crammed a handful of crackers in her mouth around 1am) and keep it down, she was allowed to be wheeled to the NICU (in a wheelchair) to hold the wee one.

It was a good lesson: If you don't first take care of yourself, you won't be able to take care of anyone else.


Quality of Life and Longevity

What is the Quality of Life Like for People with SB?

The Spina Bifida and Hydrocephalus Association of Northern Alberta has put together a series of videos to answer that very question.

For encouragement, check out the Inspirational Stories section of this website.

Something to Think About:

When people talk about quality of life, they are really asking, will my child be happy? Isn't that what a good life comes down to? Being happy? If that's true, disability has nothing whatsoever to do with quality of life - its attitude that matters. Does disability provide challenges? Of course. But there are plenty of miserable people in this world who do not have a disability. Is their quality of life better just because they don't have SB?

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” – John Lennon

For more information on quality of life issues, get connected with other SB families, check out photos of children with SB, look up famous people with SB, check out this great video at Life Rolls On.

This video by Aimee Mullins is worth 20 minutes of your time.

What is the Average Lifespan of Someone with SB?

The short answer is, "No one knows". Consider this: Anyone born with SB in 1985 was born into a world without personal computers, dvd's, the internet or cell phones. Medical technology is moving so fast that studies on longevity simply can't keep up. It sounds odd but one thing is for sure: in the history of the world there has never been a better time to be born with SB.

Parent's Note: Due to the level of my daughters SB, she is a paraplegic in a wheelchair. I am sometimes asked, "Will she ever walk?", and my answer is, "Not until medical technology catches up with her. But some of the smartest people on the planet are working on it."

Sports and Recreation: North Carolina


296Adaptive Sports & Adventures Program
The Adaptive Sports and Adventures Program is designed to challenge youth and adults with physical disabilities to develop skills that will lead to and enhance an active and productive lifestyle - one without barriers or limits.

The Charlotte Rollin’ Bobcats Wheelchair Basketball program exists with the purpose of giving individuals with physical disabilities an opportunity to be part of a team, learn about life, basketball and that a physical disability does not have to mean your disabled from doing what you want.

3/28/12

The Power Pumper

Zinger

Fashion

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

Children


Shoes to go over AFOs

Shoes to go over AFOs

SmartKnit
SmartKnit Seamless AFO and KAFO socks for adults and children provide a protective foot and leg interface designed specifically to help AFO and KAFO wearers maximize skin health, successful compliance of orthosis use, and all-day comfort

Adults




Lega Wear


SmartKnit
SmartKnit Seamless AFO and KAFO socks for adults and children provide a protective foot and leg interface designed specifically to help AFO and KAFO wearers maximize skin health, successful compliance of orthosis use, and all-day comfort


Camps: Kansas

Camp Victory Junction

Travel Resources

Travel Services / Agents:





Destinations:



Nick Vujicic

Power Golf Chair

Camps: Missouri

Camps: North Carolina

Camp Victory Junction

Sports and Recreation: Alabama

Mum's Victory Over Spina Bifida

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

Newsletters and Magazines

Magazine produced by the United Spinal Association


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.

Faces of Spina Bifida
Faces of Spina Bifida online magazine is a place to celebrate diversity among people living with Spina Bifida. It’s an online community where people chronicle their lives, are inspired, and make connections.

Flourishing Families is a Special Needs Resource Guide for the San Diego area

Magazine produced by the SBAA

New Mobility was launched in 1989 to bring quality journalism to an underserved readership. Founder Sam Maddox recognized a community of wheelchair users who wanted more information on how to lead active, healthy lives and were willing to speak openly about everything from so-called "walking programs" to sexuality. He tapped seasoned writers with disabilities and college interns alike to produce a unique resource that shattered stereotypes and told real stories of living life on wheels.

Spina Bifida University is a series of videos dealing with various aspects of SB

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

Sports and Spokes

SPORTS 'N SPOKES is a bimonthly publication produced by the Paralyzed Veterans of America.
S'NS reports on competitive sports and recreation for wheelchair users. Since 1975, S'NS has been a leader in wheelchair sports coverage and currently goes to more than 43 countries worldwide. Our readers come from all walks of life all having one thing in common: determination! SPORTS 'N SPOKES is committed to providing a voice for the wheelchair sporting and recreation community.

Miscellaneous Fun Stuff


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.

Our goal is to provide every Children’s Hospital and Pediatric Department in the country with a Kid Flicks “movie library.”

Icing Smiles
Icing Smiles is a nonprofit organization that provides custom celebration cakes and other treats to families impacted by the critical illness of a child.  We understand that the simple things, like a birthday cake, are luxuries to a family battling illness.  Our goal is to create a custom cake for the ill child, or their sibling, that provides a temporary escape from worry and creates a positive memory during a difficult time.

Inspiration Through Art (Formerly the Littlest Heroes Project) provides the following services; Photo sessions for children infant- 21 who are dealing or have delt with any type of serious illness, children who have been a part of any type of serious illness resulting in illness or disability, photo sessions for families who have lost children within the last 3 years due to a serious accident or illness, organizations or foundations holding events/ fundraisers for a child or for children suffering from serious illnesses, care package send outs, snail mail support letters and cards, bracelet/necklace gifts, mailing lists with specials and discounts for participating families. All of our services are free to the participants as a way of giving back to the smallest of heroes.

Ted Meyer loves bodies. He loves to paint them, photograph them, even print off them. He loves healthy bodies, but also bodies in states of trauma and healing. He creates puzzles of bodies that celebrate sexuality and survival. Through his artmaking, photography, design, curation and publishing projects, Ted portrays the beauty and humor of physicality while exploring narratives of the human condition

Service Animals

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 Angels
We all know how valuable service dogs are to people with disabilities. They provide constant companionship and assistance with everyday tasks such as retrieving dropped items, opening doors, and getting help. Many organizations providing service dogs focus on adults. Canine Angels Service Teams fills a unique niche in the service dog world by providing specially trained service dogs, at no cost, to children as young as 5.

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.

We Are All Disabled - Mine is Just Visible

The end is the best part - worth the wait!



Ricky James



RICKY JAMES 824.COM

Learning to Walk: Better Late Than Never

Only Sky Beneath Your Feet

How I Botched My Daughter's First IEP

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!

Scottish Rite Center

Similar to Shriners, the Scottish Rite is not a government program. Members pay dues and raise funds to provide various health services to children in need (commonly but not limited to speech therapy).

CLICK HERE to find your local Scottish Rite Center and the services they provide.

Shriners Hospitals for Children

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

Non-Government Resources

In addition to the government, there are some excellent non-governmental resources out there as well.

The Elisha Foundation
The Elisha Foundation was founded to provide refreshment and encouragement to families caring for people with special needs. Through our programs we seek to provide access to resource professionals, educational specialists and other valuable resources.

Family Voices
Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

Kids as Self-Advocates
Kids As Self Advocates (KASA) is a national, grassroots project created by youth with disabilities for youth. We are teens and young adults with disabilities speaking out. KASA knows youth can make choices and advocate for themselves if they have the information and support they need.

Scottish Rite Centers

Shriners Hospitals for Children


Walking with Anthony
Walking With Anthony’s mission is to forever change the recovery outcome of spinal cord injury, currently perceived as unchangeable. Walking With Anthony is committed to: Educate/Raise Awareness, Support SCI Research, Expand SCI Rehab Centers, Provide Financial Assistance to Individuals with SCI

Once Your Child Turns Two, Begin to Prepare for Your First IEP Meeting

"IEP" stands for "Individualized Education Program".

If your child is receiving Early Intervention Services such as Physical Therapy, Occupational Therapy or Speech Therapy, those services will most likely become the responsibility of your local public school system once your child turns three (depending on your state). Some insurance companies will not cover services such as speech therapy once your child turns three because they assume your child will be receiving those services through the public school system.

For some background and history, this video is worth your time:


http://youtu.be/DUn6luZQaXE

It is important to remember that our nation's school system did not make these changes voluntarily. The changes came because Federal Law imposed them on the school system. While there are MANY talented, hard-working and committed educators in our special education programs, it is unwise to assume that every teacher and administrator in your school district supports the concept, goals and additional expenditures that come with a special education program. This is one of the reasons IEPs are a necessity.

Anecdotally, I have had wonderful, kind and compassionate educators (personal friends) tell me that they absolutely do not think children with disabilities should be integrated into the general school population (I disagree). I have had a number of special education teachers (not in my district) tell me that even when they know their school district offers a program that would help one of their students, they are forbidden by their district to inform the parents because the additional services cost, you guessed it; additional money. Imagine if you took your child to the doctor and the doctor knew what was wrong and knew what would cure the illness but refused to tell you. Sadly, that is the state of certain areas of special education these days. It's getting better but just as the Emancipation Proclamation did not cure racism overnight, our special education laws did not immediately and completely do away with discrimination against those with disabilities.

Special Education does not "just happen" the way typical education does. A good IEP will not only be the vehicle that will provide your child's education, it will protect it as well. As a parent, you are the primary key to whether your child's IEP is robust and effective or otherwise. Believe me, much to my shame, I know from experience. For a laugh, you can read my post entitled "How I Botched My Daughter's First IEP".

But who wants to read a bunch of special education legal mumbo-jumbo? Nobody. But it has to be done. That's why I recommend starting when your child turns two years old. This will give you a full year to read and educate yourself little by little at a comfortable and workable pace.

IEP Resources:

Familiarize yourself with the the five main laws concerning IEP's, Special Education and Disability. You don't have to read the actual laws but a scan of the "high points" on Wikipedia is worth your time:

The Rehabilitation Act of 1973

Section 504 of the Rehabilitation Act of 1973

The Education for All Handicapped Children Act

Americans with Disabilities Act (ADA)

The Individuals with Disabilities Education Act (IDEA)

In addition, your state may have passed laws strengthening the Federal Laws. For instance, those in California would want to take a look at the Lanterman Act.

- Friends and Family: Chances are, you know a teacher. They may not be a Special Ed teacher but I bet they know someone who is. Make a connection, buy them coffee, ask them for the top ten things that make an IEP great. Contacting teachers in a different school district than your own is great as they may feel more free to advise you.

- Other Parents: Talk with other parents who have had children in Special Ed for at least a couple of years. Take advantage of their wisdom gained through experience .

- Special Education Rights and Responsibilities Handbook: This is a free publication from Disability Rights California. It combines both Federal Law and California law so every last sentence may not apply to your state however it is an excellent resource to get you familiar with the IEP process.

- Spend Some Money at Wrightslaw: Wrightslaw is considered by many to be the premiere source for Special Education guidance. You can find their books on Amazon as well. They also have an email newsletter you can sign up for - which I recommend.

- Check Out Disability Rights Advocates: DRA is a non-profit legal center whose mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.

- Google "Special Education Advocacy" in your area and see what comes up. Chances are, you will find an organization you can consult with or possibly even take a class on IEPs that is offered.

- Join the Council of Parent Attorneys and Advocates: They have resources as well as an email newsletter that will help you become familiar with current issues and trends in Special Education

- Check Out the Disability Rights Education and Defense Fund: More resources

Resources for California:

Special Education Advocacy Certificate Program: This training is designed not only to help parents and professionals better understand special education law and its application, but also to help future advocates develop the skills to effectively facilitate the IEP process. Ultimately, we seek to reduce the barriers between parents and schools in order to promote good communication and effective negotiation, in addition to working ethically and responsibly for the benefit of the child with special needs.

Team of Advocates for Special Kids (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.

Disability Rights California
Mission Statement: Advance the rights of Californians with disabilities.

Compass Center at University of San Diego
The COMPASS Family Center is a San Diego non-profit organization that provides family-centered supports for those caring for a child or adult with special needs.

State Council on Developmental Disabilities
The Council advocates, promotes and implements policies and practices that achieve self-determination, independence, productivity and inclusion in all aspects of community life for Californians with developmental disabilities and their families.

Advocate Yellow Pages

I KNOW. It's A LOT. But it is worth it. If your child has a physical or cognitive delay/disability, the sooner you get them the best possible educational help, the better. As I said earlier, there are ANGELS in Special Education who want to work hard to see your little one thrive . . . but they aren't all angels, and often the angels aren't the ones controlling the budgets. In many respects YOU are your child's guardian angel - become their educational angel too. Even angels have to sharpen their swords from time to time.

Apply for other State and County Programs

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

Apply for CCS (California)

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

Apply for SCHIP

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

Apply for HIPP

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.

Apply for Medicaid (Medi-Cal in California)

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 5)

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

Apply for SSI Childhood Disability Benefits

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)

Apply for Early Childhood Intervention Services

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.

Get a Handicapped Placard

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.

In addition, check with your state regarding reduced Disabled Entry Fees to your state's parks. For instance, California offers a Disabled Discount Pass. For $3.50 you can get a lifetime pass that will cut your State Park entrance fees in half!