HOW CAN I HELP? : SEVEN WAYS TO SUPPORT A SPECIAL NEEDS CAREGIVER
We could all use a helping hand from a friend, a stranger or a church parishioner, someone who gives us a tiny boost of hope when we need it the most. Here are seven tangible ways you might consider helping a special needs family.
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 but excuse our initial awkwardness. For most of us it’s been a while 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. You’re a hairstylist? Offer to give our children haircuts in the comfort of our home. Use the skill set that you have 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 children to 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 Vacation Bible School, 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.•
ABOUT THE AUTHOR:
Jess Ronne is an author, speaker, podcast host, documentary producer at caregiverdoc.com, and caregiver advocate. She is founder and executive director of The Lucas Project — a non-profit dedicated to providing recognition and respite for special needs families. She and her husband Ryan live in Michigan with their eight 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 purchase her latest book, Blended with Grit and Grace.