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“The ups and downs of Down Syndrome”

Life with a child that has special needs is unpredictable. They’re all different and they all have their own triggers that set them off and sometimes those triggers can strike when you least expect them. Faith is a fun, funny, happy, and smart little girl. However, there are times, usually at the worst time for me, she gets frustrated or startled. Faith is still non verbal (we work on it and I’m not giving up on her speech). She uses sign language and gestures to communicate. So when she gets upset, she often yells because she doesn’t have the words to ‘say’ how she’s feeling. It’s heartbreaking and frustrating for her and for me. It’s hard enough at home when it throws off the rest of the family, but in public it’s another thing entirely. Strangers that do not know you and who aren’t capable of understanding (through no fault of their own) may stare or roll their eyes in disgust. Others give a sympathetic smile. But for the mom who is trying her best and nothing helps, it’s a heart-wrenching ordeal.

My daughter has Down Syndrome but many of her behaviors are like those with other special needs. I’m part of an awesome group of moms (shout out to my Yellow Roses… lots of love) that also have children with special needs. Some of our children have Down Syndrome, Prader-Willi Syndrome, Autism, and other special needs. I strongly encourage you to find a support group that’s right for you. My girls are local and we try to schedule Mommy Nights as often as our schedules allow. Their support is invaluable to me. I often feel like no one ‘gets it’. So after a night with my group, I feel better that they really do understand. We share tricks, possible solutions, compassion, love and support. If you cannot find a local group, please follow this blog and feel free to comment and ask questions.

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