Fear. Guilt. Sadness. Anger. Those are just a few of the emotions that parents may feel when their child is diagnosed with a disability. Sometimes the diagnosis is a complete surprise, and other times, it’s something that they may have suspected. The diagnosis can be made in utero or during the child’s early years. But no matter how and when it happens, having a child diagnosed with a disability is a painful experience.
What if your child has been diagnosed as having special needs? How do you get past these initial feelings of shock and disappointment? How do you rise above your emotions to help your child succeed?
Don’t Block Your Feelings.
First of all, recognize that your feelings are normal. Christine Walker, a Chicago mother whose son has special needs, says, “Be sad. Be mad. It’s not only natural, but it’s expected that you’d feel like you have been wronged.”
Annabel Stehli raised a daughter with autism and has written three books on the subject, including Dancing in the Rain: Stories of Exceptional Progress by Parents of Children with Special Needs. Stehli says parents need to grieve. “Grieve over the brain that might have been. Grieve for the body that might have been. Grieve, and then move on. If all of your energy is tied up in those negative feelings, you can’t help your child.”
Know that You Are Not Alone.
“Having a special needs child can feel very isolating,” says Walker. “It’s easy to stay home and think that you are the only one dealing with that situation. Seek out support groups. Form your own groups, if none exist.”
Don’t Play the Blame Game.
Your child’s disability is not your fault, nor is your spouse to blame. “Looking for someone to focus your anger on does no good,” cautions Walker. Pointing your finger at your spouse or his medical or family history is not productive and can be extremely hurtful. You will need to lean on one another for support, and blame can only damage your relationship.
Arm Yourself with Information.
Read everything you can about your child’s disability. Most libraries have a parenting section with books on raising children with special needs.
The Internet also offers a broad spectrum of information on nearly every type of disability. “Websites, chat rooms, and the like are tremendous sources of information about conditions, treatments, and medications that are up-to-the-minute,” says Walker. Additionally, many of the websites that focus on disabilities will mail information to parents for free or for a very nominal charge. Be sure to consult your child’s doctor regarding the information you find.
“Being informed is the best offense in managing the daily and long-term challenges of parenting a child with special needs,” says Walker. “Know what you need and pursue it.”
Be Your Child’s Best Advocate.
“No one can or will ever care more about a child and his well-being than his parents,” says Walker. “As such, it is squarely on the parents’ shoulders to fight for the best information, treatment, doctors, and options that exist.”
Annabel Stehli agrees. “Familiarize yourself with the law,” she advises. “Every parent has to be his own researcher.”