Parenting A Special Needs Child: You’re Not Alone

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Okay, first take a deep breath.

What would you do if the moment your baby was born, the doctors told you something was wrong? When you sat down with you child?s teacher or physician, they told you they thought your child should to be evaluated for a learning disability?

Our Kids Have Rights

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.

Different Types of 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”.

Autism

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 child?s educational performance.”

Professional Help

Considering, all US children have a right to a free public education, what Congress and the government does is look at whether and how a child’s “disability” will affect a child?s 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 have to 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.

You’re 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 outpouring 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 it?s 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. It?s a short, quick and messy party and then I get back up on my horse and out there fighting.

Celebrate the Small Stuff

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 what?s amazing is there are days of satisfaction, joy and gratification. Your child’s little milestones, like holding a fork, become major miracles. It’s okay to celebrate them.

A Child is Always a Child First

One gem that Ellen, who has a son with Cerebral Palsey and writes the blog Love That Max, believes 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.

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