9 Characteristics of Parents Raising Kids with Special Needs

by Jul 5, 2018Encouragement, Special Needs Parenting3 comments

I identified these 9 characteristics of parents raising kids with special needs at our recent Wonderfully Made Family Camp. Do you agree with them?

At the beginning of June, I spent a long weekend at camp with 40 sets of parents, their kids with special needs, and their typically-developing children, too. During 3 days of observing and interacting with families and interacting, I noticed several common characteristics common. Whatever their children’s ages or diagnoses, these 9 characteristics of parents raising kids with special needs rang true for every family I met.

  1. They are isolated. Not by choice, but by circumstances that make getting out of the house difficult. Such as lack of understanding by the general public, hard to manage behaviors, medical conditions that require oodles of equipment, obstacles due to mobility, and financial hardships.
  2. They are problem-solvers. Even though the camp was handicapped accessible and every child with special needs had a one-on-one buddy, challenges popped up now and then. But dads and moms found creative ways to overcome them. Even better, other parents stepped in and brainstormed solutions with them.
  3. They are sleep-deprived. Many of their kids sleep poorly or need medical monitoring, so parents haven’t had an uninterrupted night of sleep in years. Somehow they keep going, but I came away from the weekend thinking that a perfect Christmas present would be for someone to volunteer for night duty so they could sleep nonstop for 12 hours.
  4. They are hopeful. Not Pollyanna hopeful, but realistically so. They believe their kids have a valuable and necessary purpose in this world. They may not know what the purpose is yet, but they believe it exists. And they parent their children in the sure and certain hope that the world is a better place because their kids are in it.
  5. They are grieving. During the morning speaker sessions, grief was defined as the space between what we think life will be like and what life is really like. Heads nodded vigorously at this statement as each parent in the room realized that they will always live in that space. Tears were shed, and plenty of them, but the mood of the room was not one of despair. Rather it was one of shared understanding and compassion.
  6. They are persistent. These parents do not quit. Ever. They keep looking for a way forward. They keep looking for resources. They do not stop. They do not give up.
  7. They are effective advocates. Partly because they are persistent (see #6), but mostly because they love their children. Their love is fierce and unending, sacrificial and holy. They know they are their children’s voices and that their children deserve to be heard.
  8. They are transformed. Over and over parents said they have been transformed by their children with special needs. They said they were stronger, sadder, more resourceful, more grateful for the small things, and more compassionate toward others who struggle in life.
  9. They are living the gospel. No one said that in so many words. But by their constant acts of service for their children, they were being the hands and feet of Christ. Their hope, perseverance, joy in suffering, and sacrificial love for their children testifies of the Holy Spirit at work within them and of the world yet to come when all things will be made right. Now, I wonder, how can I be the hands and feet of Christ to them?

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By Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

3 Comments

  1. Kathy

    This is all very accurate but above everything here we are blessed. We have met such strong friends whom we otherwise would not have met. We share a common bond with them and we learn that above all, we are stronger and luckier than most because we love beyond limits.

  2. Jolene

    Hi Anne,

    Thank you for your comment and insight. I will keep your suggestion in mind for future posts. I hope my faith can peek out while also being welcoming to those who don’t share it.

    Grateful for you,
    Jolene

  3. Anne

    I really like this list, and the explanations, but since I am not a Christian, I think maybe the last trait could be more general towards all parents of special need kids as saying they have faith in something greater than themselves. They believe there child is worthy and that there is a better day coming that will provide the best life for their child and their family. All of the other characteristics are great, but non-christian parents have children with disabilities, and our hope my be in another faith, or maybe one based without religion, as athiests also experience this life. Thank you for writing this article. Just a thought for the future.

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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