Newly diagnosed? In other words, has the baby you’re carrying been diagnosed with a medical condition in-utero? So many feelings swirl in reaction to such news.
So what now? What do you do when receiving some of the worst news an expecting parent can receive? First, take time to grieve your loss — because it is a loss. The loss of the dreams and expectations you had for your child is an overwhelming reality to face. But fear not, for there are other treasures to cherish that await you . Life is still precious no matter what form it comes in!
And if you truly feel unable to raise the child, remember that adoption is an option. There are parents who are ready to welcome a child with special needs.
You Are Your Child’s #1 Advocate
Whether you gave birth, are fostering or have adopted a child with special needs, educate yourself on your child’s health care issues. Ask the medical staff working with your child to explain his or her treatment strategy thoroughly so that you remain well informed. It is not you versus them –work together . They won’t be taking your child home and caring for them on a daily basis, so you need to be a part of knowing as much as possible about your child’s condition. You are the hub for your child’s care team. Start a notebook or a journal for the questions that may cross your mind and a binder or folder for test results, educational handouts, and other medical paperwork. You’re going to wonder about a myriad of things, and it is important to voice your questions or concerns to your doctor. This journey may seem overwhelming, so as with anything important in life, get organized now.
Learn from Others
If you are a parent or expecting parent of a child with special needs, you are not alone. Do not be afraid to speak to people in support groups created for your child’s condition. They are happy to talk about their experiences, and they are great resources for you to and learn from. If you are having trouble understanding your child’s condition and the treatments, support groups can help you to understand more clearly. Furthermore, these people will understand your fears, concerns, and rollercoaster of emotions better than anyone else. You can also find information and support through the Internet. Online sites such as Be Not Afraid provides support to parents experiencing a prenatal diagnosis and carrying to term (www.benotafraid.net). The Mighty, another great online resource, houses hundreds of stories from parents and caregivers of children and adults with special needs (www.themighty.com). L’Arche, which features communities of faith and friendship for people with and without intellectual disabilities, is yet another group that you can turn to for advice, comfort, and support (www.larcheusa.org).
Depending upon your child’s condition, regardless of your income or whether or not you have health insurance for your child, there is a way to get your child covered by Medicaid or SSI to help with medical costs that may not be covered by primary insurance. Even if you have decent insurance, there are plenty of medical costs that insurance won’t cover but are essential for children with special needs. Durable medical equipment and in-home therapy are just a few of these costs. Another common need is hearing aids for children. Most private health insurance policies won’t cover them, and albeit some states require coverage, not all do. Hearing aids run about $3000 – $5000 for a pair. That’s a big chunk of change for something that is essential to a child who is hard of hearing. Medicaid, however, will cover hearing aids for children. Even parents whose income is too high to qualify for Medicaid can have their children with disabilities covered under what is known as the “Katie Beckett” category. That additional coverage can make a huge difference for families. For more information on this category, visit the link provided under “resources”.
The process of obtaining the proper Medicaid or SSI help your child requires can be confusing, so request a case manager from your insurance company to guide you. This person can help streamline the burdensome insurance process and can facilitate communication among different doctors offices. This will prove to be especially helpful if your child has multiple diagnoses and sees different specialists.
The Individuals With Disabilities Education Act (IDEA) was passed in 1975 to ensure that children with disabilities have access to a free, appropriate public education. Amended many times since then, the law regulates special education services both for school-age children as well as for babies and toddlers. Early Intervention, sometimes called Part C of the IDEA, helps babies and toddlers with special needs develop the new and basic skills that typically develop in the first three years. Early Intervention programs also provide family-directed services that help the parents learn about their child’s needs and how to enhance his or her development. Early Intervention or Part C services are available in every state and territory of the United States. To access Early Intervention services in your area, contact your local Early Intervention office for a free evaluation of your child. If you are not sure how to contact the Early Intervention office, ask your pediatrician for help.
The IDEA also regulates special education services for school-age children, including preschoolers. One of these regulations mandates that every child who is enrolled in a special education program, or is mainstreamed but has a learning disability must have an Individualized Education Program (IEP). Each child’s IEP is developed by the parent(s) and a team of educational professionals, and spells out the specifics of the child’s special education services, including annual learning goals, the provisions the school must make in an effort to achieve these goals, and the reasoning behind the chosen plan. This legally binding and enforceable document allows the parent(s) to obtain the quality of education, care, and attention their child deserves. The parent(s) and education team must review a child’s IEP at least once a year to determine if the goals set for that year were achieved and if they should be revised. It is up to the parent(s) to ensure that their child’s IEP is sufficiently comprehensive and adequately outlined, and that it is executed in full.
One of the most important things you can do in the IEP creation process is to prepare. Be organized and keep all of your child’s records together. Take good notes of every phone call, meeting, and conversation, and keep them all together in one bound notebook. This includes the date and time of phone calls, the name of the person with whom you are speaking, the reason for the call, and any solutions offered or arrangements agreed upon.
Creating the IEP may be the easier part of this journey. Difficulties often lie in its full execution and enforcement. If you have a justified problem with the IEP and/or its execution, there are five steps you can pursue to resolve it:
- State your concerns to your child’s education team and seek a resolution with them. Ideally, this will resolve the issue and there will be no need to take additional steps.
- Contact your school district’s Special Education Director to explain your situation and lack of success with the first step.
- Continue up the chain of authority by contacting your county’s Special Education Office.
- Contact your state’s Special Education Office.
- Obtain an advocate to represent you in the matter. This should be a last resort, after the other avenues have been exhausted.
To research and learn more about special education law, education law, and advocacy for children with disabilities, visit Wright’s Law (www.wrightslaws.com). This online resource will provide parents and caretakers with accurate and reliable information on these educational topics. Another good site to refer to is the Center for Parent Information and Resources (www.parentcenterhub.com). Funded by the Office of Special Education Programs at the U.S. Department of Education, this site is a central source of information for parents of children with special needs.
Children with disabilities want the same things as any other child their age. They desire to feel included and exercise their independence. And like most children, their activity interests are diverse: playing sports, visiting parks and playgrounds, attending summer camps, hanging out with friends, etc. But routine childhood activities can be both physically and mentally challenging for children with special needs. Take advantage of the obstacles present, and treat them as teachable moments to encourage your child to persevere through challenges.
The options available for children with disabilities to participate in physical activities and accessible leisure alternatives continue to grow. Camps and programs across the country offer special needs children with fun and memorable experiences. Use the Kids Camps (http://www.kidscamps.com/specialneeds-camps.camp) search tool to find a camp in your state. Other organizations that offer safe activities camps includes Adaptive Sports Foundation (www.adaptivesportsfoundation.org) and Keen USA (www.keenusa.org).
Caring for Those Who Cannot Care for Themselves
Life is about challenges and obstacles, and we are not guaranteed it will be good or “fair”. It is how you rise to these challenges and overcome obstacles that determine your quality of life. Whether you choose to raise your child, place your child for adoption, or adopt a special needs child, you both can live a full and happy life.
By Danica R. Vassigh . The author wishes to acknowledge the contributing writers and researchers, Molly Pannell and Lauren Sumners.
Be Not Afraid, www.benotafraid.net
Center for Parent Information and, www.parentcenterhub.org
Katie Beckett Category of Eligibility for Medicaid, www.healthlaw.org/issues/child-and-adolescent-health/qa-katie-becket-category-of-eligibility-for-medicaid#.VYnuYmC4ndQ
Keen USA, www.keenusa.org
The Mighty, www.themighty.com
Special Olympics, www.specialolympics.org
Wright’s Law (special education law and advocacy for children with special needs), www.wrightslaw.com
What You Can Do
- Form or participate in a support group. If you are the parent of a child with disabilities, consider joining a support group online or in your area. If there is not already a group for your child’s specific condition, form your own! You have “been there done that” and your experiences can provide insight for other parents they would not otherwise have.