For Life: What Families of Children with Lifelong Needs Need

May 31, 2017 Central Nervous System, cerebral palsy, hypoxic ischemic encephalopathy, Lifelong needs, May 2017 Feature - For Life 1 Comments

Adopting a child with special needs can be scary. And even scarier when that child has needs that just might require a lifetime of parental care.

This month we are hearing from those whose parenting journey has diverged from what most would think typical. They’re parenting children who require more than what many would believe doable. And they’re doing it in a way that we consider remarkable.

Join us this month as we hear from those parenting their special little ones For Life.


I was talking recently with some friends about what it’s like to be a special needs parent through adoption. Some of us in the discussion were adoptive parents, some just friends and family who love us, but all of us were striving toward the same thing…

How can we best support and love families with children with lifelong needs?

I am mama to three children (with a fourth on the way from China soon!) including a five-year-old boy with cerebral palsy adopted from Uganda three years ago and a two-year-old girl with cerebral palsy adopted from China a year ago, both of whom we expect will be at home with me and my husband for life.

When we welcomed our son home, we had little support nearby – we were new to our church and had no family in town – so when we began the adoption process again, we asked ourselves, “Can we do this with two?” Thankfully, throughout the past three years, our community has grown and we now have a great support system in place, including our church, respite and a great school system that serves our kids well.

So often the support that families had as they were working toward bringing their children home falls away and parents are left to figure out their new normal alone, not because of willful neglect from friends or family, but often just because they don’t know what to say or do.

It can be a lonely and hard road.

Throughout my years as a special needs adoptive parent, I’ve picked up a few tips that have made my life easier. Here are some of the ones have been most helpful to me, including things that I can do myself as well as things friends and family have done for me.

For special needs families:

1. Find connection where you can.

Like me, you likely don’t have a large community of families with major special needs right around you. I have had to intentionally seek out fellow mamas who understand what parenting children with big needs is like. Thanks to Facebook, it’s easier than ever to connect with families like mine; I’ve befriended local families as well as families around the world who have similar family dynamics.

Having a community that can relate is invaluable while traversing new diagnoses, navigating community services, or just giving a shoulder when things get rough.

2. Graciously accept help.

This one has been hard for me, but as I have added more children with special needs to my family, the reality that I can’t do everything on my own has set in. It still doesn’t come naturally, but I try to say “yes!” when someone offers to rake my yard or run an errand for me.

3. Hire extra hands.

Because of our children’s medical needs, we are allotted 30 hours a month per child for respite services through our state. The time can be used for babysitting or for extra hands while I’m at home with the kiddos, ranging from having someone help me tidy, feed kiddos or work on therapies with them, just to name a few things.

4. Be gentle with yourself.

Parenting children with major medical needs is hard. Research shows that many parents of children with special needs have post-traumatic stress disorder. Remember that you have needs too, and you are not a bad parent for needing to put yourself first sometimes.

For those who love a special needs family:

1. Offer specific help!

Recently, I had someone from my church call and ask if a group of students could come clean up our yard. Yes! And we needed a new baby seat from a store and someone offered to go pick it up for us. Yes, again!

Offering to do specific tasks instead of vaguely saying, “Let me know if you need anything!” is so much more helpful.

2. Lend a judgment-free listening ear.

For special needs adoptive families, it can be difficult to talk about the struggles because many people respond with “Well, you signed up for this.” Having safe people with whom we can voice struggles is invaluable.

3. Love our children.

Seeing our community enjoy and delight in our kiddos is one of the most precious things to me. Remembering that they are children with likes and dislikes, personalities, and eternal spirits too will no doubt win you the hearts of their parents.

– guest post by Kelsey: email || blog || instagram

One response to “For Life: What Families of Children with Lifelong Needs Need”

  1. Shelly Roberts says:

    So good, Kelsey! Specific help – YES!!! Real, specific help isnso welcoming and helpful in the midst of our often hectic lives.

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