Approximately one in six children in the U.S. have been diagnosed with special needs — ranging from mild disabilities such as speech or language difficulties to more serious disorders — according to the Centers for Disease Control and Prevention (CDC).
Down syndrome, the most common genetic condition, currently affects more than 400,000 people in the U.S. According to the CDC, Autism Spectrum Disorder (ASD) affects 1 in 68 U.S. children and is 4.5 times more common in boys than girls.
The four main classifications of special needs follow.
If your child has been newly diagnosed with a special need, it’s normal to feel a range of emotions — including denial, fear, guilt, disappointment, depression and grief. It’s not uncommon to feel isolated and alone. However, it’s important and encouraging to note that we live in a world where many familiar faces with special needs thrive.
Consider Andrea Bocelli, the world-famous singer who is blind. Stephen Hawking became a brilliant neurophysicist in spite of a debilitating neurological disease and being confined to a wheelchair, unable to speak. Cambridge researchers have hypothesized that Albert Einstein may have suffered from Asperger’s Syndrome, although at the time he was simply labeled eccentric. For every celebrity with a special need, there are many more unrecognized heroes among us who live with special needs.
Choose the Right Healthcare Provider
One of the most critical decisions you will make for your special needs child is choosing the right primary healthcare provider. It is essential to select someone with whom you are able to develop a collaborative, respectful relationship.
Seek a provider experienced in treating kids with special needs. If possible, look for someone close to your home, as frequent trips are to be expected. When considering healthcare practices, try to find one with a designated person for referrals and service/care coordination with specialists in the area. Don’t be afraid to ask about seeing other specialists such as those in occupational health, psychologists and physical therapists. You will probably need frequent notes for teachers, permission to administer medications at school, insurance reimbursement forms signed, etc. Look for practices with flexible hours and ask about after-hours emergency procedures, especially if going to an urgent-care facility. Having a provider who has admitting privileges or a close working relationship with area hospitalists will help you have seamless care transitions.
It is a good idea to write down questions before your visit. Ask to record the conversation on your phone so you can refer to it later. If that’s not possible, ask the provider to speak slowly and allow you to take notes. Request reputable references to gain further information about your child’s diagnosis. Remember that you are your child’s best advocate, and you have the freedom to disagree with your provider or ask for a second opinion.
Know Your Rights and Options
It is important to know your rights under U.S. law. The Individuals with Disabilities Act (IDEA) gives children with special needs protection by mandating that schools must help them be prepared for further education, employment and independent living. Free education must be accessible in the least restrictive environment. Appropriate evaluation is mandated with parent and teacher collaboration to determine the best student placement. The law also requires informed consent, “stay put” rights (requiring parents to be notified of any change and allowing the option of remaining until a dispute is settled), parental access to education records, parental participation in all meetings, due process and mediation. The law also has protections for confidentiality of information, transition services beginning at age 16 years, discipline protections and prohibiting the school from forcing your child to take a medication.
Section 504 of the Rehabilitation Act prohibits schools from discriminating against children with disabilities and requires accommodations as needs arise. It also supports the right for needs outside the school day, including extracurricular activities, sports, music lessons and afterschool care, affording special needs children the same opportunities as other kids. It applies to playgrounds, band programs, assemblies, field trips, clubs, after school/summer programs, bus transportation and graduation. The Americans with Disabilities Act states that schools must meet the needs of children with psychiatric problems.
An Individualized Education Program (IEP) is a legally binding document that tells you the special education services for which your child is eligible. It allows for accommodations, which may include a change in timing, formatting, setting or the way material is presented. The law requires parents to be notified any time the IEP is changed.
The Department of Education’s website has a disabilities information center with many resources to assist you. The National Institute on Disability and Rehabilitation Research has a central focus on the whole person with a disability, researching advancements to improve quality of life and function. The Special Needs Alliance provides a connection to free attorney services that practice disability and public benefits law.
Siblings of kids with special needs are at greater risk for having special needs themselves. The CDC has a campaign and website called Learn the Signs, Act Early, focused on helping parents identify developmental milestones and seek early intervention. The National Center for Children and Youth with Disabilities (NICHCY) State Resource Sheet identifies the name and telephone number of your state’s contact person for programs for infants and toddlers with developmental delays and disabilities.
Give Yourself and Your Family a Break
Joining a support group is one of the most important things you can do, online or in person. The NICHCY has listings of parent groups and programs for which your child may be eligible. Parents Helping Parents is a parent-directed, community-based nonprofit helping to connect parents of children with special needs to other parents, resources and services.
Another critical element as a parent is to care for yourself. Many times, people want to help but don’t know how. Be clear about your needs. Ask a friend to bring a meal when you are having a hard day. Invite another mom for a pedicure. Have a date night with your partner. Don’t feel guilty taking time away. Know that you will make mistakes. You will have bad days and meltdowns. Forgive yourself and move on.
Look online at the ARCH National Respite Network Resource Center, which helps connect families to safe, competent respite care. Remember that siblings need respite care, too. It’s normal for siblings to sometimes be jealous, and have conflicting emotions toward a sibling with special needs. Allow them to express their feelings openly and honestly. Encourage sibling bonds with other supportive adults to make it easier when emotional burdens are too great to meet all children’s needs at the same time.
Above all, remember that you are a superhero, even when you don’t feel like one. Every day you are providing care, giving medication, managing specialists, calming meltdowns, finding the special blanket or toy. You never give up hope and you encourage your child to do what others have deemed impossible.
Being a parent of a child with special needs can be super-rewarding. Remember to celebrate the small accomplishments. Take a picture of a good moment to have a ready dose of encouragement when you need it most. Don’t let insensitive comments dishearten you, and don’t compare kids. Your child is unique and special. When other parents discuss their children’s accomplishments, focus on your child’s personality strengths and the way your child encourages and completes your family.
Jessica Peck, DNP, RN, CPNP-PC, CNE, CNL, is an Associate Professor at Texas A&M University and has been practicing in pediatrics for more than 20 years. She is currently the secretary for NAPNAP.