Facing the Challenges of Raising Children with Special Needs

Common Emotions Experienced by Parents of Special Needs Children

From the moment your child’s disability is diagnosed, you’ll experience a range of emotions: anger, worry, love, hope, and everything in between. All of these feelings are normal. Here are a few of the emotions parents and caregivers of kids with special needs have reported feeling:

• Anger towards a partner, the child, the medical system, or the educational system.
• Fear over the child’s future and safety.
• Feelings of isolation due to depression or not wanting to interact with others.
• Grief at the loss of the “normal” child you had imagined or of plans for your child’s future.
• Guilt for being unable to protect your child.
• Resentment toward others with “normal” children.

Many parents are simply overwhelmed after they learn the details of a child’s diagnosis and special needs. They might have known in their hearts the gist of the problem, but a diagnosis and a treatment plan bring new responsibilities and duties to an already busy life. Dealing with insurance, new financial concerns, appointments with specialists, therapy, medications, and many other details are piled on.

Parents: Take Care of Yourselves

The stress of balancing career and family -- and balancing the needs of a child with disabilities with the needs of other children -- can also take a toll.

It’s important to take care of yourself. Try these tips to de-stress:

• Establish a regular exercise routine.
• Maintain your friendships and social activities. A social support system is invaluable, especially for stressed parents.
• Try various forms of meditation until you find one you like.
• Plan fun activities with the whole family.
• Schedule special “alone time” with your partner/spouse or a close friend.
• Hire a babysitter or respite caregiver to give yourself a break.
• Read uplifting books written by other caregivers of children with special needs.
• Focus on the present instead of fretting about the future.

Find Resources Available to Children with Special Needs and Their Parents

Many parents of children with special needs recommend connecting with other parents whose children have disabilities. There are parent-to-parent programs throughout the United States and around the world. The National Information Center for Children and Youth with Disabilities (NICHCY) has listings of parent groups that will get you started.

You’ll find comfort and support in talking to other parents who understand what you’re going through. Another parent of a special needs child — especially one with more experience — can also provide you with helpful information and advice. So join parent groups — either those organized around a particular disability or those with a broader scope. If there are no support groups in your area, seek out discussion boards on the Internet.

Collect Information

As a parent of a child with special needs, you’ll likely become an expert at researching and collecting information about your child’s disability and services. These skills will help you become an expert in your child’s disability and increase your effectiveness as you advocate for services. There is a sea of information available on the various disabilities and related issues. Learn how to organize your information so you can access it when you need it.

Your Rights Regarding Childcare

Finding good childcare can be difficult for any parent, but it’s especially challenging for parents of special needs children. The Americans with Disabilities Act of 1992 prohibits discrimination against families with special needs children, making the challenge a little easier. The law stipulates that childcare providers have to make “reasonable accommodations” and can’t charge more for your child.

Special Education in Public Schools

The Individuals with Disabilities Education Act (IDEA) guarantees all children with disabilities a free and appropriate public education. Under the law parents can expect an:

• Appropriate evaluation by the school district.
• An Individual Education Plan (if your child meets eligibility requirements), that will be developed for him and should be implemented in the least restrictive environment.

To start the process to receive services and accommodations from the school district, meet with your child’s teacher to let him know your concerns. Submit a written request for evaluation to the school district or a school administrator.

A Section 504 Accommodations Plan may be another option. Section 504 is civil rights law separate from IDEA and requires schools that receive federal money to give children access to educational programs and services. Any child who doesn’t qualify for an Individual Education Plan (IEP) can request educational modifications under Section 504.

Teens and Transition

As your special needs child becomes a teen, your job as a parent changes but doesn’t become any less important. At this stage, parents need to work with their teens to provide opportunities for work, friendship, and education. Parents of teens with disabilities should be aware that their children may be more at risk for bullying, substance abuse and thoughts of suicide. Adolescents with disabilities need a supportive and caring environment as they form their plans for the future.

Although raising a child with special needs can be more intense than raising a “normal” child, it’s still a journey of parenting, meaning that love and a deep bond between parent and child is primary. If you remember to enjoy the ups and to take care of yourself during the downs, you and your child will be just fine.

Related articles:

Parenting a Child With Special Needs (National Association of Social Workers)

Parenting a Child with Special Needs (National Dissemination Center for Children with Disabilities)

Special Needs & Disabilities: Information for Adults Who Care About Teens

The ABCs of Advocacy for Children With Special Needs

Choosing Child Care for A Child With Special Needs