March 2016 Newsletter

CP News For You!

Raising a child with CP can be exhausting and expensive.  Often we feel that we are alone and not well supported.  This month's newsletter focuses on three items that may help with alleviating that feeling the you are alone. 

While many of us hold down jobs so that we can afford all the equipment our children need to thrive, we would rather be home with them or meet them at home after the bus drops them off.  Some relief is offered by a group that one of our members brought to my attention.  Equipment Connections is an organization that helps families with therapeutic equipment needed for a child with CP (and other disabilities) Their website describes the organization as follows: Equipment Connections is a 501(c)3 not-for-profit organization whose mission is to serve children with a disability in the greater Washington Metropolitan area by connecting costly adaptive equipment from children with disabilities who outgrow the equipment to other children who need it. We accomplish this mission through soliciting adaptive equipment donations and matching them to the families with a child with a disability in need of equipment. Our vision is for a world in which all available adaptive equipment is in use by the children with disabilities who need it.

The long and short is that they accept donations of items no longer needed by families and they accept applications for items that are needed by families.  They are located in Montgomery County, MD.  Families can go pick up items after their application has been accepted.

And while we are at work and then coming home to be more than full-time parents to our special children, we sometimes need a break.  I found Jill's House to help with providing respite to exhausted parents.  From The Jill's House website: We authentically love all children that come to Jill’s House and their families. They inspire others. Their stories impact our lives in the most positive ways, and we strive to impact theirs by providing a safe, fun place full of adventure and activities made just for them.  Jill’s House is designed around the children, we adjust to them, not them to us. The activities are carefully and strategically planned to meet the child where they are, with the purpose of bringing normalcy to childhood. We provide cozy and comfortable sleeping areas for safe and secure overnight stays, with constant and watchful care.

For families that need a much deserved break from caring for their special child, Jill's house offers just that.  You can drop off your child for some engaging activities in a safe and nurturing environment and take some time off for yourself to do whatever you need to do to catch your breath!  Jill's House accepts families regardless of religion, race or ethnicity.

Finally, I want to remind you that Fairfax County Public Schools holding its annual Special Education Conference.  I reviewed the agenda and it looks like it may address many of the concerns that we share as parents of kids with CP.  I encourage you to attend some of the sessions.    Conferences and sessions like these make us feel connected and supported and I find that to be VERY important.

Mayya Saab