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 their exceptional burden 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.
Jess Ronne is an author, speaker, and caregiver advocate. She is founder and executive director of The Lucas Project—a non-profit dedicated to providing respite opportunities 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 www.jessplusthemess.com or Facebook/Jessplusthemess or Instagram/Jessplusthemess.
