Have you ever thought about joining a support group? Support groups are everywhere. There are a lot of on-line options now with Facebook groups and Yahoo message boards but you can still find lots of in-person meetings.
There are groups that are disability specific and others for all parents of kids with disabilities. Some are just for parents of children with multiple disabilities or even undiagnosed disabilities.
Talking with another parent that has experienced similar things to what you've gone through or that can empathize with your daily struggles can be extremely helpful. It’s comforting to know you are not alone and to have someone to talk to about the hard decisions you make as a parent.
When I began my journey with my daughter, it seemed that no one else had a child with hydrocephalus. Even when I reached out to Texas Parent to Parent, I could not find another parent that had a child exactly like mine, but they matched me with another parent whose child had some of the same issues and it helped so much. Our experiences were so similar.
After I felt like I had my feet under me, I decided to become a volunteer Parent Mentor. I will always remember how lost and alone I felt. I wanted to be there for somebody else. I didn't want anyone else to feel as lost, frightened and alone as I did. Everyone should have a guiding hand and a friendly voice.
If you can't find a support group for the disability or issue that you're currently experiencing, think about starting your own. Using Facebook or Yahoo Groups can be tremendously helpful. Simply use a few key words and other parents can find you and join your group. Texas Parent to Parent is willing to help and advertise your group.
Just having the chance to speak with someone who gets it can lighten the load and help you get from one day to the next. I am not sure I will ever be able to say how much I appreciated having someone to talk to in those early days. Just knowing there is another mom out there that was doing okay gave me such hope and saw me through some tough times.
Paying it forward to another parent was the pleasure of a lifetime. Support groups or parent matching can be amazing. We all need support from time to time. You can learn more on this website at Connecting with Other Parents of Children with Disabilities.
There are some things you expect to deal with when your child has special health care needs, but some things take you by surprise. One thing that took us by surprise was body odor.