As a neuropsychologist, I’ve spent a career evaluating, diagnosing, and treating special needs children and helping to care for their family. When I became acquainted with Jess Ronne and her story and mission, I knew we had to have her on Your Hope-Filled Perspective podcast.
We shared a very candid conversation about how hard it is to be a special needs parent, and the need for the special needs parent to ensure they are caring for themselves as well as their children. It was an eye-opening discussion. If you missed that episode, listen here: Self-Care for Caregivers – Episode 168.
On the podcast, I not only want to help listeners who are going through trials and can relate to our guests who offer a hope-filled perspective, but I also want to equip others to help carry the burden as we are told to do in scripture. Today, Jess shares 7 ways to help care for special needs families.
7 Ways to Help Care for Special Needs Families
By Jess Ronne
Anger, guilt, anxiety, loneliness, stress and exhaustion. Pick a feeling and a special needs caregiver has experienced it, and not occasionally or seasonally. No, it’s more likely experienced on a very consistent basis, if not a daily one.
I know I struggle with these emotions on a weekly basis. How could I not? I have 8 children and one of them is my 16 year-old son Lucas, who has profound special needs. His needs include incontinence, limited mobility, primarily non-verbal communication, and he requires assistance in every aspect of his life. I hardly know how to relax anymore or dare try to decompress (pick up a book?!) because the second I sit down and actually exhale, there will be another task beckoning me. I’ve discovered that it’s more difficult to rebound out of relaxation mode than to simply continue to move forward, head down, in stressed out mode.
We could all use a helping hand from a friend or a stranger or a church parishioner, someone who gives us a tiny boost of hope when we need it the most, but special needs caregivers are in an exceptional category: exceptionally anxious, exceptionally lonely, exceptionally stressed, and exceptionally exhausted. Please be aware of these people in and around your life.
Here are seven tangible ways you might consider lifting the exceptional burden of special needs families just a bit.
1. We are a lonely group, and as we crawl deeper into our loneliness, we struggle with anxiety and depression. We are often excluded from gatherings because of our extra needs or we decline the invitation because the reality is, it is difficult in our circumstances. We know it will be overwhelmingly exhausting if we follow through. We try to save our limited supply of energy for our children, but we don’t want to live like this. If we invite you over, please say yes. And, please offer to bring something. We are desperate for community and really want friends. Excuse our initial awkwardness. For most of us it’s been awhile since we’ve had the opportunity to use our social skills.
2. Offer to watch our children for a few hours so we can take a break—even the scary kid. Sorry, bad joke, but I get it! My Lucas would be a bit intimidating if I didn’t know him. Ask questions. A lot of these kids have really simple familiar routines, and if you stick to the routine, they’ll be content for a few hours.
3. Allow us time to vent. Don’t try to fix it or understand it or pray it away. Just listen and empathize—which is not offering solutions but looks more like “I’m so sorry, how can I help?
4. Exhaustion is part of life as a caregiver. All the ways people help are greatly appreciated, because we are being seen. We feel invisible most of the time. Bring over pizzas for dinner or gather a crew from church to do yard work. Use the skill set that you can offer to help lighten our load. We will be so grateful.
5. If we have other kids, and most of us do, we yearn for them to enjoy the fun normal things that kids love: football games, sleepovers, birthday parties, dodgeball games at church, bowling, the list could go on and on. We want these activities for our children, but it’s often difficult to bring them to extracurricular activities with our special needs situation. It takes a ton of extra work to bring Lucas anywhere, and with his sensory issues, most of these fun options are not practical. We are okay with staying home with our kiddo, but we don’t want our other kids to constantly miss out. Please offer to take them and bring them home if possible. This is a huge help in our life and leaves us feeling a little less guilty.
6. Encourage the church or any tribe you belong to in the community to step it up and support special needs families in some way. A few examples include: a weeklong summer respite camp, a special day of VBS, a monthly break to serve the community, or a love offering to purchase a family some desperately needed equipment for their child. The possibilities are endless.
7. Finally, big pet peeve of mine, if you’re going to offer to pray—or bless my heart in the South, please offer to DO. Prayers have little value if not followed up with something tangible.
What have you done to help others in similar situations? Or what did you learn from Jess’s wisdom that you’ll use going forward? We’d love to hear in the comments below.
About Jess Ronne
Jess Ronne is an author, speaker, documentary producer, and caregiver advocate. She is the founder and executive director of The Lucas Project—a non-profit dedicated to provide recognition, resources, and respite for special needs families. She and her husband, Ryan, live in Tennessee with their 8 children, including their son, Lucas, who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail, and Huffington Post, and is detailed in her memoir Sunlight Burning at Midnight. To follow the ongoing saga, she can be found at Jessplusthemess.com or thelucasproject.org.