A business friend and his wife have been expecting twins. I recently learned from a mutual acquaintance that one of the twins was born with spina bifida, a relatively rare spinal cord defect. I later learned that the couple knew of the defect prior to birth (a predictive medical advancement I was unaware of), so it was not the shock that I first imagined it might be for them. But thinking of that possible shock made me think what I, as the long-time parent of a special needs child, might say to a parent new to the special needs world.
First and foremost, I would say, “It’s not the end of the world.” It might seem like it. But it’s not. With advances in all types of treatments and the availability of many resources, life will go on. Your child may have a brighter future than you can imagine today. Don’t prejudge or attempt to put pre-determined limits on her. You will face challenges. Some will be daunting. Some will seem insurmountable. You and your child can move forward and progress.
Second, your life will be different. This is true for all parents, but yours will be different in ways you didn’t anticipate. You will meet people and make friends that you would not have met if not for your child’s disability. You will learn a level of patience you didn’t expect. You will become involved with organizations and parent support groups. You will educate yourself on medical issues, government benefits, and school requirements because those will be part of the challenges, and the fights, you will encounter.
Achievement will take on a different meaning for you. Small steps may be more meaningful than you could imagine. Big steps will seem even bigger. Being engaged with all of the elements of your child’s life will be even more important. and depending on the nature of the disability, all these issues may be with you for the rest of your life. Empty nest may be a syndrome you never experience.
Do your research. Find an organization that can help identify appropriate resources, doctors, benefits, and supports. Learn the law and the rules that apply to your situation. Maybe volunteer for an associated non-profit or serve on their board of directors. It’s a big, new world that you’re entering into, and there are as many opportunities as there are challenges. Be not afraid but take heart in knowing there are many others who have gone before you, and however dire you think your situation is, you will encounter people whose situation is worse
Your life will be different, challenging, and rewarding.
Note: If you have advice you’d like to share with a parent new to the special needs community, email us your comments to firstname.lastname@example.org.