Accept, Love, and Learn from Your Unique Child
Your child’s disability does not define the person he or she will become. Your first perceptions about raising your child will not be your reality. With time, the reality is often much more rewarding than you’d thought. Often what seems at first like a great burden proves to be an incredible gift.
Know that many other parents have gone through this. Seek their advice and counsel at every opportunity. You know only what you have experienced in the past; embrace what you are about to learn. Have faith that you will find the strength and support you need if you remain open to them.
Give Yourself Permission to Grieve and Time to Recover
Be aware that you are grieving, and let it play out. Give yourself time to recover emotionally. You will need more rest than usual in the early days because of the stress. Do not blame yourself or your spouse for your child’s disabilities. Think about the long term in making early decisions.
Get all the guidance and advice you can from experts in this field and from other parents. Take time to absorb, adjust, and adapt. Understand that those close to you are mourning too. Your life is changing, but it will be manageable if you take each day as it comes.
Allow Family and Friends to Help You Move Forward
Resist the urge to isolate yourself. Accept the support of family and friends. As quickly as possible move from a reactive position to being proactive. Establish new daily routines. Return to doing “normal things,” including work, socializing, and recreation. Find support groups, online forums, and other sources of information.
Let Your Child Be Your Guide
Understand that your child is a complex individual not defined by disabilities or labels. Let your child teach you who she is, how she can be reached, and the meaning of unconditional love. Focus on what your child can do rather than what he cannot do. Encourage and support your child by allowing him to set his own pace.
Keep the lines of communication open and always assure your child that she is loved and valued. Do not assume she is okay even if she says she is. Monitor your child’s moods closely and stay in regular contact with his teachers, especially in the preteen and teen years.
Become Chief Advocate for Your Child’s Medical Care
Become the medical expert on your child’s health and needs, and be prepared to fight for whatever is best for his or her long-term well-being. No one will care as much as you do.
Know the laws governing the health-care rights of disabled and special-needs kids in your community, state, and country so that you can be an effective advocate. Prepare for every doctor, therapist, and hospital visit so that you know the right questions to ask.
Keep detailed medical records and notes on your smartphone, laptop, and home computer for emergencies. Your records should include all surgeries, treatments for illnesses, injuries, and allergies, as well as all prescription and nonprescription drugs. Do not ever trust that your physician or emergency-room doctor is aware of your child’s entire medical history.
Make the most of all medical and health resources, including support groups relevant to your child’s needs, online forums, websites, and expert blogs. Be cautious about information on the Internet, however, and never follow advice unless your child’s physician approves it or you’ve checked it out thoroughly with other experts and other parents.
Do your best to maintain good relationships with your child’s doctors, nurses, office and hospital staff, therapists, and caregivers while letting them know you will advocate strongly for the best treatment for your child.
Give the Siblings All They Need Too
Your child’s siblings can be best friends and allies or resentful rivals for your affections and attention, so it is very important to take every opportunity early on to give them as much of your love and time as possible so they don’t feel left out.
Siblings may feel resentment if the disabled child is not disciplined or assigned chores or is otherwise given a pass on things for which the siblings are held accountable. So whenever possible, it is best to allow the disabled child no special treatment.
It’s important to educate your other children about the causes, nature, and impact of their sibling’s disabilities. They need to fully understand that they are not at risk of “catching” the disability and that the disabled child may not be able to do all they can do but that he or she still needs and desires their love and support. Teenage siblings can have complex and contradictory feelings about a disabled brother or sister during those years when being accepted and fitting in socially becomes so important. Be aware of this and do your best to help keep their family bonds strong.
Try not to saddle siblings with responsibilities for the disabled child. It puts too much pressure on them and may stir up resentment. Talk to the siblings about what they can learn from having a special-needs brother or sister and what they can tell their friends about him or her.
Prepare Your Child for Adulthood
Perhaps the greatest gifts we can give our children toward their success in adulthood are a foundation of unconditional love, a sense that they have a purpose in this world, a value system to guide them, and a spiritual base as a perpetual source of hope.
Parents of special-needs children often take it day by day in their kids’ younger years because that’s the only way they can function. That may well be the appropriate strategy, but once their children reach the teen years, parents should begin to look at whether and to what extent their kids can become independent and self-supporting as adults—and help them prepare for that stage of life.
Adult children with autism, major mental and physical disabilities, and Down syndrome may be incapable of living independently, so parents must do whatever they can to ensure their children are protected and supported in their adult years by consulting with their physicians, therapists, teachers, and lawyers to determine their capabilities and vulnerabilities.
No parent wants to put limitations on a child, so if your child identifies a career path that seems overly ambitious or beyond reach, it might work best to guide him to develop a backup plan and help him pick up the necessary skills and knowledge. Prepare yourself for the day when your child declares independence and takes flight. The adult you raised just might amaze you.
Keep the Bonds of Marriage Strong
One of the most harmful things parents of a disabled child can do is to neglect their marriage. Your child needs a solid family foundation of support and love—and you need each other to be sources of strength. Frustrations and tensions can easily escalate in a household with a special-needs child, so open communication and expressed feelings are vitally important.
We found it helpful from time to time to go off together and remember why we married in the first place. There is no shame in making the most of available resources, including family, friends, ministers, therapists, psychologists, support groups, and government agencies. If you need help to keep your marriage strong, ask for it!
Laughing at yourselves and life’s craziness is a great way to lighten the load. We recommend fun family times, fun friends, and funny movies in large doses.