Three Needs of Special Needs Caregivers

Writing or presenting new ideas for parents of children who have been living with disability for any length of time is an enormous challenge, and if you’re one of those parents, you know why! You have already championed, researched, reached out and kept up. You know so much—not only about your child’s diagnosis, needs and ability, and the needs of your family, but also about many resources to empower and serve. You could be writing your own blog.

Just as every child, regardless of physical and intellectual ability, is exquisitely unique (and thus there is no “one size fits all” when it comes to services for a child’s enrichment), there also is no “one size fits all” for the caregiver of a child with special needs. Even so, we can recognize some common threads (aka needs) among caregivers. These include: 

The need for connection

Isolation is a foe that none of us can afford to tolerate. Staying connected—forging bonds to share joys, concerns, frustrations and vital information—is empowering. How to connect?

• Support groups for parents are extremely beneficial, both for mutual sharing and relationship. About Special Kids (ASK), an organization whose mission is “Helping children with special needs live better lives by educating, empowering and connecting their families,” has an invaluable Resource Directory of great info, including leads to support groups.    
• Parent Café is an experience/movement that is growing in Central Indiana to encourage parent friendships, sharing of ideas, advocacy, etc.  It’s another resource you can find in your area by using the Resource Directory. Just go to the “Keyword” section and type “Parent Café.”
• Online supports, e.g. parent blogs, can be so uplifting even when a physical support group isn’t possible. A quick search in Google can deliver strength, relevant encouragement and even some humor—at any time of day or night! Also, the free CareAware “Help and Hope for Family Caregivers” video series is another very convenient and helpful resource. 

The need for respite

There are far more respite opportunities than can be mentioned here, and they come in all shapes and formats! 

• “Parents’ night out” activities are periodically hosted by organizations, including Easter Seals Crossroads and various faith communities offering a ministry to individuals with special needs.
• Summer camps, e.g. those of Easter Seals Crossroads, whose Camp ABILITY, Camp FUEL, and Camp ROCKS provide interactive experiences for your child.
• Respite services are available through specific state funding sources, i.e. Medicaid Waivers, Family Support Waiver (FSW) or the Community Integration and Habilitation Waiver (CIH).

The need for all-family activities

In addition to local museums that welcome families with special needs (referenced in a prior blog,) you might also consider something that lasts a bit longer:

• Family retreats, e.g. the extraordinary opportunities at Center for Courageous Kids in Scottsville, Ky., are, quite literally, priceless. Families pay nothing for this wonderful opportunity to engage, unwind, explore, and have fun!   

We’ve surely overlooked many possibilities here, so be sure to visit 50 Great Websites for Parents of Children With Special Needs. And by all means, get to know the ASK Resource Directory, where you’ll have an opportunity to find a wide variety of resources for your unique situation.

Finally, please make every effort to address the common needs of connection and respite for yourself, and refreshment for the entire family.  They are well deserved!