4 Special Needs Parenting Truths

Our newest grandchild arrived at the end of January. She's 8 1/2 pounds and 20 1/2 inches of pure snuggle sprinkled with dark, curly hair. Because her parents and brother live in the apartment below us, we see and hold her almost every day. Her life thus far has been free of special needs or disabilities, other than tummy distress and a nasty diaper rash after her mommy ingests soy.


Even so, her tiny presence continually brings to mind 4 truths I wish someone had spoken into the whirlwind of our son's special needs diagnosis in the hours after his birth.

  1. Parents must embrace the now. After our son was born, I traded the joy of his now for worries about his future. Instead of reveling in the opportunities we had to cuddle him, I resented the times we couldn't hold him close. Instead of drinking in his presence, I only thought of how empty life would if he died. I forgot that the life God had given him, though its early days weren't what we expected, was still a valuable and precious life. If you are a new parent, I urge you to embrace the now that is your child's life. Live every second, minute, hour, and day your child is with you to the fullest, and leave the future to the future.
  2. Each child is unique. I see her uncle's features in this granddaughter's dark hair and heart-shaped face. But, I often have to tell myself, she is not her uncle. She is her own person. My role is not to use her to fulfill what I didn't experience with my son because of his special needs. My role is to support her parents so they can provide an environment that allows her to become the unique person God created her to be. Accepting your child's uniqueness and unique story will empower you to accept the unique person God created your child to be.
  3. Children and their parents need a wide support network. We watched our granddaughter's big brother while the rest of the family was at the hospital during labor and delivery. Now that the baby is home, we give big brother extra cuddles and watch him so his mommy and daddy can nap when the baby sleeps. His parents are grateful for our help, for the meals friends have provided, for baby gifts, and for hand-me-downs. Every new parent needs a wide support network. Parents of kids with special needs and disabilities need an even wider one. So you need to accept support when it is offered and thank God for providing it. You must also ask for help when caregiving becomes overwhelming. Otherwise, no one will know that you need them.
  4. Accept that parenting is very hard. And it is very good. Time and distance softened the sharp edges of our parenting journey and buffed the smooth parts into a shiny glow of good memories. But with a new baby in the house, I am reminded that parenting is hard. It's comprised of sleepless nights, poopy pants, unexpected expenses, difficult decisions, and constantly changing expectations for new parents. But this new baby is also a reminder that parenting is also very good for the soul. When you became the parent of a child with special needs, you learned to love sacrificially. You learned to give with no expectation of getting back. You are learning that God uses the loving and the giving that is special needs parenting to transform you into someone you could not be without your child. You are learning to trust Him completely. And that is very good thing.

No one spoke these truths to me in the hours and days after his birth. But thanks to this new granddaughter, I am able to whisper them to you: Embrace your child's now. Revel in your child's uniqueness. Tap into your support network. Lean into the hard work of parenting and know that it is good. Very good indeed.

Jolene Philo is the author of five books for the special needs community. She is currently collaborating with Dr. Gary Chapman on book about using the 5 love languages in special needs families. She connects with parents of kids with special needs at her blog, DifferentDream.com and speaks at about special needs parenting, special needs ministry, and post-traumatic stress disorder around the country and internationally.