A Call for Allies for Families with Complex Disabilities
I spoke with a woman at a local non-profit organization this week (while asking for resources), and she referred to our family as a “niche population”. We are complex in three ways: co-occurring developmental disabilities, medical complexities, and serious behavioral challenges. It was her nice way of saying that her non-profit is not equipped to help us with our needs. She was one of many who had no resources for us other than a rabbit trail of other non-profits to call to hear the same story.
This is life at the extreme end of the spectrum.
It has been found that mothers of adolescent children with autism have stress levels comparable to combat soldiers. “This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
This study evaluated mothers of children with autism, who, to my knowledge, do not have other co-occurring conditions.
Programs, services, and supports are designed to fit the bulk of the population, leaving those of us at the far end of the bell curve with nowhere to turn for help in raising a child whose needs are extreme. Families with complex disabilities like mine are often so immersed in caring for our children that even the task of finding and obtaining what few resources are available is beyond our ability when we’re fatigued and stressed. When we do rally the time and energy to seek them out, they’re inadequate at best.
This is why we need allies. Parents of complex children do not have the resources it takes to get through daily life, let alone to advocate for more resources. Many parents of children with complex disabilities do find the time and energy – even when we’re running on a deficit to begin with – to advocate for the resources we need. But our efforts require more of us than we have to give, and often go unheeded because we are but a lone voice.
Imagine what would happen if those who know and care for complex families each took the time to write a letter to their elected officials asking for more resources for children with extensive needs and the families caring for them. Imagine what would happen if those same people got together and tag teamed to fill some of those enormous gaps in resources.
As a small community, people with complex disabilities lack a voice. Only by having allies join with us to ask for programs, respite and caregiver support can our voices be heard and heeded.
What can you do?
- Volunteer for an organization that supports disabilities.
- Call, write or email your elected officials asking for funding for the programs that would benefit your loved ones.
- Offer whatever you are able to give to the families you know, whether it’s a little bit of time to sit with the child while the parent runs errands or makes phone calls, a gas card, or stopping over with a cup of coffee and the offer to stay and chat or not, as the family chooses.
- Listen. We have often learned to keep quiet about what life is really like, we need people to listen and understand.
- If your heart is moved to do something, do it right away. Don’t second guess, don’t wait, just do it.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
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Resources for Complex Disabilities:
National Respite Network and Resource Center: National Respite Locator
- Information and resources on planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers.
- Parent center providing support and advocacy for children with disabilities and their families
- Connects trained volunteer Support Parents with parents seeking information, resources, guidance, and support from experienced families of children with special needs
Wrightslaw Yellow Pages for Kids
- Click on your state to find local resources for children with special needs from adaptive ski lessons to legal representation
More Articles Related to Complex Disabilities:
- Job Description: Parent of a Child with Complex Needs
- Child Care for Children with Complex Needs: No Rest for the Weary
- How to Help Parents of Children with Special Needs Using the Ring Theory
- Recorded Webinar: Managing Stress as the Parent of a Child with Special Needs Video
- From a Complex Medical Mom: Letter to My Child’s Doctors
