The special needs of a special-needs parent

Written by: Julianne Neely

Parents of special-needs kids have their own special needs.
Photo credit: Julianne Neely
 
One thing I know with absolute certainty is that we wouldn't have been able to advocate as hard and effectively as we have for our children without our community. I also know that our kids wouldn't be as strong and stable as they are today without the amazing friends and family who have gone above and beyond to keep us, their parents, strong. 
 
Everyone knows someone with a special-needs child and I guarantee that even if they haven't asked or even if they tell you they just need your thoughts and prayers, they need concrete physical support. I know because I've been there. I've said those things when a well-meaning friend asked, "What can I do?" or "How can I help?" Because I was too overwhelmed to figure out what I needed I just said, "Prayers." Or, worse, I said nothing at all.
 
The truth is, parents of special-needs kids often need so much more than prayers—we just don't know how to ask for help. But when someone says "Can I do X for you?", the answer is almost always "yes." So please, start offering specific ideas for how you can support parents when you hear their child is sick in the hospital or at home. Your help could very well mean the difference between life and death for a child. Seriously. The better you can support a special-needs family, the more effectively they can advocate for and support their child. And that could affect that child's chance of recovery. 
 
Need some ideas on what you can can offer to parents? In my experience, the following is what my family has needed most. Here are 15 easy (and hard!) ways you can help special-needs families:
 
When they are in the hospital:
  • Buy groceries and fill their fridge
  • Clean and tidy their home (chances are they left in a hurry!)
  • Offer to take an overnight shift so they can sleep in a real bed
  • Bring coffee 
  • Bring them clean clothes
  • Sit with their child so they can shower
  • Offer to provide transportation to and from hospital (parking costs add up quickly!) 
When they are home: 
  • Offer to come over and sanitize toys
  • Do laundry
  • Bring coffee
  • Bring a meal
  • Send a pizza
  • Offer to entertain babies so parent can fill out paperwork, call insurance companies or just take a shower
  • Offer to spend the night and be the one to deal with beeping machines 
Remember, these small things have the potential to make a BIG impact. You may even help save a life. The best way to support a special-needs child is by supporting her parents, so the parents can support the child. Complex children deserve a complex village supporting them every step of the way. Also keep in mind that this list applies to not only children with medical complexities, but also children with a complex emotional or behavioral diagnosis. Those families need your support, too. 
 
Julianne Neely MSW, LCSW, is a business owner, special needs mom, foster-adopt parent and pediatric therapist. Julianne has become the leading expert in pediatric mental health in Chicago, where she owns and manages Individual and Family Connection. At IFC, she has the privilege to manage a team of amazing clinicians who are passionate about working with children and seeing them thrive.
 
Posted on April 06, 2016 at 11:12 AM