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Caregivers are often the unseen and overlooked part of special needs care. In this podcast episode, Annette speaks with Jessica Ronne, an author, caregiver advocate, and mom of 8, about caregiver support, her caregiver nonprofit The Lucas Project, her blog “Jess + the Mess” and her 2 books “Sunlight Burning at Midnight” and “Blended with Grit and Grace.”

Jess’ family story is one of heart break that leads to happiness. Her second child Lucas was born profoundly disabled due to a stroke in utero. A few years later, her first husband passed away from brain cancer leaving her a widow at 33 with 4 children under 7, one profoundly disabled. Jess had been blogging throughout all this as writing to her is a form of release. A chance comment on her blog from one of her followers lead her to her current husband – his wife had passed away from brain cancer around the same time as Jess’ husband. They have been married now for 11 years and have a blended family of 8 children.

Caregivers are Often Overlooked

Jess is a strong believer that caregivers need support and often don’t get enough recognition for what they do. Caregivers are usually involved in the side of care that society does not want to hear about, the mess, the unhappiness, the hurt. Society only wants to hear the happy, positive side but Jess believes we need to tell the caregivers side of the story, so people understand. Jess’ quote from the Today Show article “Autism Wars” resonates with Annette who also feels the same way – “I believe children are only as healthy as their caregivers — and to help other caregivers, it does involve peeling back the curtain a little bit and allowing people into our lives. People can’t fix what they don’t know about.”

The Lucas Project – Respite & Recognition for Caregivers

Jess started the nonprofit The Lucas Project to support caregivers who she feels are often overlooked. The Lucas Project provides recognition and respite to caregivers through care packages, spa baskets, gift cards, wish lists and grants. The Lucas Project is also sponsoring a documentary called “Unseen: How We’re Failing Parent Caregivers & Why It Matters.”

For Disability Awareness Month, Annette and Jess also speak about transitioning your disabled child. As Lucas is profoundly disabled, his transition is a bit more complicated and involves more planning due to services needed. Most caregivers and programs support young children, but often drop off in what they will provide for young adults and adults. Often the waiting lists for these services are extremely long, anywhere from months to years and caregivers can be hard to find and trust as the pay is poor and their training is minimal. Government and state agencies that provide some of these services, often provide what they think parents need rather than actually asking parents what they need, so at times finding a service that is actually needed can be an issue.

Tips to Support Caregivers

Jess, as a caregiver and caregiver advocate, offers some tips as to how you can support caregivers. Do something to help however you can. Bring a caregiver lunch or dinner – give them options to choose from, be specific rather than an open-ended question (do you want pasta or a burger? NOT do you want something to eat?). Most caregivers will often say they are fine when they really aren’t. Offer your services, offer to cut their hair, do their nails, weed their yard, run an errand for them. If you are the caregiver parent, take care of yourself. Prioritize your own healthcare and what is important to you. To care for your child effectively, you need to take care of yourself.

Reach Out to Jess

Jess can be found on her Jess + The Mess website, on Facebook, and on Instagram. You can also find her under The Lucas Project website as well as on Facebook and Instagram. Her books can be found on Amazon – “ Sunlight Burning at Midnight” and “Blended with Grit and Grace.”

For information on other topics, please also check out Special Needs Companies. For legal advice, inspiration, and other resources, visit our blog here. Similarly, you can always listen to previous podcast episodes (and be sure to leave us a review), or download our free eBook here. We are always looking for podcast guests as well so please let us know if you or someone you know, has a special needs or disability topic you would like to speak about – Contact Us!

Please Leave a Podcast Review

As Annette mentioned, please consider leaving a podcast review for Parenting Impossible – The Special Needs Survival Podcast on iTunes. More positive ratings and reviews mean more new listeners are introduced to this informational and inspirational podcast. Look at the bottom of this page for the purple oval that says “Enjoying the podcast? Leave an iTunes review here.” This will take you over to the iTunes site/app where you will be able to login and leave a review. We really appreciate it!

You can also join our free Facebook group for the disability community, the “Circle of Care,” or watch the webinars and other speaking events on YouTube. The purpose of this community is to create a space for people to be themselves, ask questions and get support and answers, so please share these resources with your friends!

Annette Hines has been practicing in the areas of Special Needs, Elder Law, and Estate Planning for more than 20 years. Ms. Hines brings personal experience with special needs to her practice and podcasts as the mother of two daughters, one of whom passed away from Mitochondrial disease in November 2013. This deep, personal understanding of special needs fuels her passion for quality special needs planning and drives her dedication to help others within the special needs community.

Episode 126: Caregivers Need Our Support with Jess Ronne