Gwen and Scott Hartley have three children. Their son is "typical," but their daughters were born with severe special needs, including congenital microcephaly -- a small head and small brain. Their first daughter's special needs caught them by surprise. Gwen explains, "We did not know ahead of time that she had a disability -- she had a 'normal' sonogram at 19 weeks. She was diagnosed with congenital microcephaly at birth."
Gwen shares her roller coaster of emotions on her blog, The Hartley Hooligans:
"We were heartbroken initially, as we were told that she might not live to be 1 year old. We still vowed to make our daughter's life -- and our lives -- the best we could, and enjoy every moment we'd have with her... We have chosen not to focus so much on all that is 'wrong' with our child, but instead, we cherish all that our 'Mimi' brings to our lives. Her 'issues' are normal to us, and we choose to not view them as negatives but instead as just a part of who Claire is. She is an amazing little girl, stronger than anyone we've ever known, and so much more than just the sum of all her diagnoses."
Leslie Petruk, M.A., L.P.C., N.C.C., is a therapist and mom of a child with special needs. "Discussing your child's specific disabilities and allowing your child(ren) to ask questions about their disability is critical," she says. "Young children may believe they can 'catch' what their sibling has or have other inaccurate beliefs or fears they are holding onto that can be burdensome. Giving them permission to ask questions and express their feelings can relieve them of feelings of guilt, sadness or fear and clarify incorrect conclusions they may have drawn."
The Hartleys found family counseling to be helpful not just for them but for their son.
Gwen explains, "We did group counseling with Cal there, too, and we also talked to him ourselves. This was extremely helpful early on, and I am so glad we were able to do this to help all of us."
Petruk advises, "The parents must take care of yourself and your marriage. The divorce rate amongst couples with special needs children is 80 percent. Men and women deal with their grief differently -- caring for one another and walking through the challenges as a team can strengthen a marriage."
And you'll see personalized content just for you whenever you click the My Feed .
SheKnows is making some changes!