We are special needs parents. And we have secrets. Things we don't talk about and other parents don't know -- or maybe they just forgot about along the way. Here are some of them. This has come from www.friendshipcircle.org but has been modified for us....
1. Special needs parents are lonely and isolated. We yearn for more time with friends and family. We have an authentically positive attitude and most often you see us smiling. We may even look like we have this SuperParent thing down, am super busy and have enough help. But we are lonely. Being a special needs parent doesn't leave us the time to nurture and maintain the relationships we really need. We could get super detailed here about the hands-on caring for our child. (Do you remember when your kids were babies? That doing everything for them? It's that plus some.) The plus-some includes spreading our parent love around to Becca and each other, who on a daily basis are put on hold, waiting for our attention. We don't have much time to call or email our friends and even family ... and if they don't call or email us, well then we feel massive guilt about the time that has passed. More negative stuff that we pile on our shoulders. Getting out is tough. We miss the days when we had playgroups with other parents, open-house style, dropping in and drinking coffee at a friend's kitchen table with our child(ren) playing nearby.
2. Special needs parents have to work extra hard to preserve their marriages. This work goes along with the high stress of special needs parenting and aims to combat the sky-high divorce rates for special needs families. We put extra pressure on each other, we are each others best friend, and sometimes we expect unrealistic BFF behavior from each other at the end of the day (see no. 1). We would be totally lost without each other. The success of our marriage will affect the health of our children. . We don't "date night" often enough but are working on that, along with working on making our marriage a priority, so we are trying to "steal" our moments when we can.
3. Special needs parents are fluent in the transforming body language of touch.This is the first language we learn, and sometimes the language our kids know best. This therapeutic natural language can relax, redirect and heal. This should be the first language "spoken" in every home.
4. Special needs parents know to savor the gift of a child saying "I love you." As time has moved on and our journey has progressed, we aren't and weren't sure what the future holds/held. While we now know what the future holds for Ian, we don't know what the future holds for the rest of us...when Ian clicks for us to come into his room at night just so he can say "I LOVE YOU" that is the most precious gift we can ever get from him as well as from Becca when tuck her into bed and say good-night.