SHORT BUS - M's Gems

By: Melissa Goldberg

Okay, first take a deep breath.

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Oprah once opened her television show by asking, “If your child stopped speaking, wouldnʼt look you in the eye and completely ignored the world around them, What would you do?” Iʼll continue from here, “What would you do if the moment your baby was born, the doctors told you something was wrong? When you sat down with you childʼs teacher or physician, they told you they thought your child should to be evaluated for a learning disability?

Once you begin to register the situation, your “normal” life enters into a world of challenges, a world of difficult choices and a world of interactions with all types of professionals and specialists. Besides all this, you will experience a sweep of emotions and the feeling that you got a lot more than you bargained for.

The good news is, you are not alone. The statistics for the amount of children diagnosed with any disability is astounding. Fortunately over the last 30 years our scientists have made tremendous advances and our federal government has come a long way in providing services for our children, protection of their rights and access to the same privileges as any normal child.

This week we looked into the world of children with learning disabilities. We quickly realized in our research for this weeks radio show, that Cynthia and I could spend weeks and perhaps months on this topic, particularly when you begin to break down the different disabilities and the levels on what they call “the spectrum”. It's a lot to digest and has taken us to a whole new depth in our journey.

What are the different learning disabilities? 

So, to those who are wondering what are learning disabilities, there are several. They can fall within any area of your child's being - mental, physical, emotional, developmental.

The Federal Government, specifically under the Individuals with Disabilities Act (IDEA), lends it's support and offers a broad definition for “child with a disability” to encompass "mental retardation, hearing impairment (including deafness), speech or language impairments, visual impairments (including blindness, orthopedic impairment, autism, traumatic brain injury or other health impairments or learning disabilities.' A whole host of disabilities fall within the subset of "other".

When I was growing up we heard about "mental retardation" but now we hear more about Autism, mainly because it affects 1 out of every 110 children. Many people may not be familiar with what it actually is or with the "other" disabilities. Autism, is defined as “a disability affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a childʼs educational performance.”

Considering, all US children have a right to a free public education, what Congress and the government does is to look at whether and how a child's "disability" will effect a childʼs educational performance. Every child is entitled to an evaluation if deemed necessary to discover the severity of the disability and to help determine the types of help, aids and services the child will need to help with their education.

So, if for any reason your momma gut is telling you something is wrong, you can seek a professional's help. You do not go out of pocket for an evaluation and you can request one through your school district and talk to your pediatrician. Both will guide you through the process and help you find an evaluation agency. The evaluation helps to begin putting pieces of the puzzle together. Once your child is evaluated and recommended for services, then the paper work and process begins. It's a long and emotional process but through this you become empowered into action.

We had two very special guests this week on our radio show, who shared their personal stories and  ongoing journey as a parent to a child with two distinct disabilities. We spoke with Kera McCloughlin, a representative from Autism Speaks and a mom of a little boy with Autism. She walked us through her son's early years, the behaviors that raised flags, how he is progressing and the research, resources, support and work of Autism Speaks. We also spoke with Ellen, who writes an award winning Blog, Love That Max that chronicles her and her sonʼs journey with cerebral palsy which developed after a stroke at birth. She shared their struggles and triumphs and how she created her support system in a pre-mommy blogger world.

You Are Not Alone - When my daughter was born with a rare birth defect, I was blessed to find an organization and community to help our family get the help and support we needed. My daughter was born with a problem that occurs in only 1 in 30,000 births. Hearing that statistic I thought I was alone, but I was not. I have connected with parents and patients from all over the world who have been a tremendous wealth of education, help and moral support. Whenever a parent posts about an upcoming procedure, within a couple of hours the outpour of prayers and support often leaves me sitting at my computer with tears of gratitude for this “family” I have found. My own family and friends have never let us down and have always been there. So, if you are dealing with any kind of issue itʼs okay to ask for help or at least a hug.

Take Care of Yourself Too - Living and raising a child with any type of disability brings on many emotions. You ride the emotional roller coaster daily. For me, in the beginning I felt fear with a twist of denial. I felt anger. Sometimes at just the situation but at other times it was anger towards any innocent victim, such as a hospital administrator or a medical assistant that ticked me off. Also, for full disclosure, at times there has been grief and guilt. All are normal emotional responses and so I embrace them when they surface and throw myself a self pity party. Itʼs a short, quick and messy party and then I get back up on my horse and out there fighting. When speaking with other moms about the emotions a parent faces when raising a child with a disability there are days of powerlessness and disappointment, but whatʼs amazing is there are days of satisfaction, joy and gratification. Ellen spoke about her son Maxʼs little milestones and how wonderful and excited she gets when he accomplishes something new like holding his fork.

A Child is Always a Child First - One gem that Ellen mentioned which is worth repeating is that she does not feel she is someone to be pitied. It's often disconcerting for people to see other people, particularly a child with an obvious disability or handicapped. We often do not know how to respond and regress into our own feelings. What is shifting as more children are born and living with disabilities is our perception, understanding and inclusion of these children. So next time you are out at the park and see a child with a disability, encourage your child to interact with them in the same way you would any other child. 




And exhale.

Resources:
Some resources available for both you and your children and the resources I used to put together these Gems.
Autism Speaks
United Cerebral Palsy Organization
National Dissemination Center for Children With Disability
Learning Disability Online

For Further Information and History About the Government's Support & YOUR RIGHTS!
How the government protects our children - Since the 1960ʼs the Federal government has come along way when it relates to individuals with disabilities and in particular to children and youth. IDEA being the most prominent, has been revised many times and is quite extensive. I wonʼt go into too much detail but will share some of the most common and supportive acts to date.

IDEA - the Individuals with Disabilities Education Act - IDEA is a legislation on special education and is broken down into four parts A,B,C and D. Part A refers to the general provisions. Part B refers to Assistance for Education of All Children with Disabilities. Part C refers to Infants and Toddlers with Disabilities and Part D refers to National Activities to Improve Education of Children with Disabilities. IDEA was enacted in 1975 to ensure all children with disabilities have the opportunity to receive a free appropriate public education (FAPE).

NCLB - No Child Left Behind - Act of 2001, is the Nationʼs latest general education law. The intent is to hold each state responsible for making sure all students are held to high standards. This Act is intended to narrow the gap between children in low poverty areas. This law requires states to offer public records of testing statistics and school performance marks.

Assistive Technology Act - This was first passed by Congress and signed by the president in 1998 and reauthorized in 1994, 1998, 2004 and through 2010. It is intended to ensure that people with disabilities have access to assistive technology devices and services. This act also includes coordinating services and therapies under an educational plan.

Section 504 of the Rehabilitation Act and ADA - Section 504 is a civil rights law that prohibits discrimination on the basis of disability. This law helps children who require special education and related services under section 504 of the 1973 Rehabilitation Act. FERPA - Family Educational Right to Privacy Act. This protects the privacy of your childʼs school records.